Saturday, 31 December 2016

Out with the old, in with the new.

Time flies when you're having fun. It also flies when you're stressed up to the eyeballs, as I've found out this year, last New Year only feels like a couple of weeks ago, I can't believe that 365 days have flown by so quickly.

2016 has an infamous reputation for many people, and I can't think of many people who won't be pleased to see the back of it.
For me it's had its ups and downs. I haven't written as much as I'd like to have written, real life has a knack of getting in the way, I have a whole load of draft posts which are far too bitter to ever post, yet are available for me to read back in order to remember the parts which have gone wrong so I can work out how to right them again.

In the style of a school parent's evening, I will try not to dwell on the difficult parts too much. I will aim for a shit sandwich; the good, the positive plans to guide me into the new year, and wodged between them, the bad.

There have been some real high points this year.
Writing this blog has been great, some of my posts have had thousands of views, which I can't quite believe (me, writing stuff that people actually want to read!). Having a voice to vent frustrations and share some of the thoughts that keep me awake at night has been very therapeutic and a welcome boost to my self-esteem.
My diagnosis earlier this year has enabled me to learn more about myself and more about autism, it has also had the benefit of allowing PDA boy to feel a bit more positive about his diagnosis as he's not alone and we have interesting chats as we discuss how autism affects us in different settings and with different people.
We have had times where we know we have got things right, and we have some lovely family memories scattered throughout 2016, which serve as a constant reminder that, no matter how hard things can be, it is always worth battling upwards and onwards.
Although they have nothing to do with PDA, a real bright spot for me has been getting our pigs, I still look at their little chubby faces and can't quite believe that we are pig owners.

Unfortunately the low points have been many. I don't know if this is because my mental health is a little wobbly, therefore anything negative that happens knocks me back and things appear intolerable. I do have a very good track record for crawling back out of this though, I'm still here and ready for the next challenge.
School has, again, been difficult. PDA boy moved up to secondary this September, and after an apparently positive start, complete with several ignored warnings from me that all was not well, he has crumbled and spent the last few weeks at home, too anxious to contemplate going to school. Our predictions of extreme masking followed by a breakdown of ability have unfortunately been proved right.
As ever, the balance of power in these situations lies with those who have little understanding of autism, let alone PDA, and the people whose voices count in the endless meetings have no interest in learning about or supporting the individual. Reasonable adjustments are convenient to school, but are impossible for PDA boy to access at this time, and as parents, our only acceptable role in this mess is "just get him into school, ok?"
This imbalance of power extends to CAMHS, and their rigid views on autism and their complete lack of knowledge about masking.

This leaves us, as a family, feeling very vulnerable. PDA boy desperately needs support, we have ideas how this would look, but no idea if these strategies would actually work because no-one has ever tried them in a school setting, despite years of providing information in an attempt to proactively keep the boy feeling able to cope, and sharing as much information as we can. At this point in time we feel that we have failed him, or at least, the system has failed him.

So now we are at a point where we plan how to proceed. We know that if PDA boy is to remain in school he will need to be supported, so January will be a time of communicating with school and hoping that they will start to understand PDA boy and see that despite his calm outward demeanour, he is an incredibly anxious boy.

2017 will be a year of reinforcing PDA strategies and re-reading The Explosive Child.
During 2016 we slowly realised that our oldest son ticks almost every box for PDA, he scores highly on the extreme demand avoidance questionnaire, it's also looking like he has OCD and Tourette's, so for him, this will be a year of trying to help him to tolerate his siblings and help him to feel better about himself. He doesn't want to go down a route of assessment, and as he is 16 we will respect that, but will be ready to start the ball rolling if he chooses this path.
2017 may also be a year where our youngest is assessed. At 5, he is showing many of the signs that his brothers showed at this age. His first year of school, where he struggled and cried an awful lot of the time, taught him to only show a happy face, sadness and tears were punished, so we know that masking will be an issue with him too. We found with his brothers that issues became more obvious as they got older, so we are still considering whether assessment now may be a pointless exercise, living, as we do, in an area that requires stereotypical, obvious autism in order to diagnose and support.

2017 will also hopefully be a year where I start to take on more myself. I stopped work when PDA boy was born, I found juggling work with three children impossible, and in more recent years we have found that due to the complexities of life, me not working has made life much easier. No paid job could be as flexible as we would need it to be, so for the time being we accept the inevitable lack of funds, but I'm hoping that some changes this year may lead eventually to some self-employed work so I can be as flexible as I need to be.

It's with some trepidation that I approach the new year, and I will be doing my upmost to get the most out of 2017 for all the family, and hopefully move on from the more challenging times, or at least have the strength to keep us all plodding on.

Thank you to all who read this blog, it's been an interesting first year.
I wish you all a calm and peaceful 2017.

Tuesday, 20 December 2016

Own your neurology, be who you are and be fabulous at it.

A lot of people in life have the opinion that a "label" of autism should be avoided if at all possible, as it marks a person out as different, it makes them feel bad about themselves, and it makes others think differently about you.

Today, I am here to say a big, enormous, resounding...


Whether we are neurodivergent, neurotypical, disabled, black, white or anything else in the wide spectrum of human life, we owe it to ourselves to be uniquely, wonderfully, us.

Because the thing is, you are who you are, and unless you put in a huge amount of effort to reinvent yourself, usually at a personal cost, you can't change that.

You can live your life trying to be the version of you that others find more acceptable, but if you deny who you are, or you deny who your child is, at some point this is going to backfire. This is the stuff that low self-esteem is built on. Suppress the real person and they will grow up knowing they are not good enough. Dismiss the difficulties and the person may assume that, because they are the same as everyone else, they are simply crap at being a person.

A "label", a diagnosis, does not change a person. A person will not be different because of the letter confirming their autism. They will be different because that is who they are, and they must understand that whoever they are is ok.

And if it's not ok for some people, well, that's their problem.

Acknowledging who someone is, and being clear that this isn't a problem, is a very powerful thing. Even without a diagnosis, those of us who are autistic are aware that there is something different, accepting that and allowing us to be ourselves without judgement or a need for us to try harder or act normal will make a huge difference to how we see ourselves, and how we deal with day to day challenges.

Being able to be ourselves comfortably means that we can be the very best we can be, and reach our potentials, safe in the knowledge that we are good enough.

Thursday, 1 December 2016

Honesty is the best policy.

As some of you know, we are going through a few issues at school.
Having been communicating with PDA boy's secondary school for over a year now, when he was still in primary school, and having been assured over and over again that they understood the problem and were able to meet his needs, we are now worried as it appears they were not telling us the truth.

Also, as anyone who reads this regularly knows, PDA boy masks exceptionally well, something we have always been very honest about. This is something we have been told repeatedly by every school PDA boy has attended that they understand. But they don't.

I wrote a short profile giving a brief description of PDA, listed the signs that PDA boy will display when anxious, and I was promised that this short document would be photocopied and shared with each and every teacher who would have contact with PDA boy. At this point I was giddy with relief, as it really felt like we were getting somewhere, and had finally found a school who would deliver on their promises.

In the last two weeks, things have started to spiral out of control. PDA boy is receiving detentions for apparently ridiculous reasons, and even a detention for displaying autistic behaviour (he corrected a teacher who had not followed a process correctly). This has led to an inability to carry out homework, greater difficulty in carrying out school work, and an increase in silly and impulsive behaviour, leading to more warnings and more detentions.

For PDA boy this is awful. His mental health has taken a severe dive, he is talking more and more about wanting to kill himself, and we are concerned about him, and expect school to step up and carry out what they told us they would do.

But this is not happening, although we will have a meeting soon and will hopefully get to the bottom of what they can actually offer to improve things.

And here's the thing, had they been honest from the outset, had they explained that rules were rules and they will not be flexible under any circumstances, and that they could not meet our son's needs, we would have thanked them and continued to search for a school that would be the right fit.

We fell hook, line and sinker for the sales patter that persuaded us that this school was The One™. And I'm ashamed to admit that this is not the first time we fell for it.

This isn't fair, and we are not alone in ending up in difficult situations because others haven't been honest with us.

I'm not sure schools realise that they are toying with real lives here. I wonder if it's a case of "increase numbers at whatever cost, then deal with it later". But by this point, there are real children whose futures rely on their disability being catered for, real families despairing and not knowing where to turn, and having to prepare for yet another battle, which may well turn out to be fruitless, again.

A policy of complete and utter honesty from all schools would save a lot of heartache for our children, and those of us who advocate for them, we would be able to choose a school knowing that they will do their utmost to carry out their promises, instead of telling us amazing things about the school and leaving us to find out when it's too late that our expectations, fed to us by them, were unrealistic, with very little comeback to prevent this scenario happening again and again and again.

School protocols and processes are not my forte, but this is definitely an area I must educate myself about if I am to advocate effectively for my boy.

Wednesday, 30 November 2016

Please try to understand.

In an ideal world, this post is one that can be read by teachers or family members, people who try to understand what our children are going through, but somehow miss the mark.
I'm not aiming for offensiveness here, but I would hazard a guess that most parents of autistic children will have very few people around them who truly get it, and they are probably the ones who also live with autism in one way or another.

Most people know what autism is, they've read an article, perhaps something shared on Facebook, or they know someone with autism, a second aunty twice removed, or their next door neighbour's cousin's son. All opinions on autism are then based on small snapshots of what they know.

But as any autistic person (or their carer) knows, when you've met one autistic person, you've met one autistic person. You simply cannot make assumptions about everyone else within the autistic community, just like you can't make assumptions about all neurotypical people, it just doesn't work.

Many people's understanding of ASD are akin to Delboy's understanding of French. You might know a few words, but that doesn't make you fluent. Mange tout.

I've noticed that when I try to explain PDA boy's difficulties, or family life, people nod along and say they understand. At school we are told exactly what we want to hear. Time and time again though it's clear that people are still going by their preconceptions to make judgements.

So I have an idea.

If someone is trying to explain something about their child to you, listen. Really listen. Forget all your perceived thoughts on that individual child, pretend the child is a foreign language that is new to you. You need to listen to hear what is being said, or you may miss vital parts. It's a given that the people who know a child best are their parents, so who better to teach about them.

When my child is anxious in school, the signs he shows may be the same as another child's general oikishness, but reading it as such puts my child in a damaging situation - he can no longer cope. Assuming he is the same as his peers and disciplining as such leads to extremely challenging behaviour. You need to see his behaviour through an anxious, PDA boy lens in order to spot what's going on, and I believe in you, you can do this, but you need to drop all the comparisons.

If Sam, sitting over there at the back of the classroom, understands that flicking his fingers is wrong and distracting, please understand that for another child, flicking their fingers is a coping mechanism, enabling them to remain calmly seated in the room. If Grace can understand what you mean with a well-honed death-stare, please don't assume that this is the same for all children, and definitely don't punish a child for not understanding vague gestures and ambiguous comments.

If you have a relationship with a child, whether it is teacher/pupil or aunt/niece or whatever, you owe it to everyone around to give the child a chance to shine in their own way, and the best way to do this is to allow yourself to accept them for who they are and learn who they are, and see for yourself that they are good enough as they are.

The risk of not learning the child is that you may find them frustrating, naughty, unco-operative, but these are merely symptoms of a bigger root cause, one that is preventable by knowing the child and treating them in a way that respects their neurology.

Of course I expect a cry of "But teachers have twenty nine other children to teach" and I agree, they do, but in PDA boy's case, a little bit of understanding, a few more warnings instead of strict adherence to petty rules, would mean less time focusing solely on him as he messes around, would mean fewer pupils (because I can't believe PDA boy is the only one in school struggling like this) in detention each night, I do wonder if teachers would save time and energy by understanding their autistic pupils better, and family members might have more quality time with their autistic nieces, nephews or grandchildren, instead of finding them so difficult in comparison with their NT family members.

Tuesday, 29 November 2016

Sensory lightbulb moment.

This week I have had another lightbulb moment of my own, involving something which I thought I had a decent understanding of.

Sensory issues.

At the time, I felt like a genius, I had single handedly worked out what was happening during sensory overload.
On reflection, I realise that I hadn't fully understood the whys and the wherefores of overload, so my assumption of genius is probably not accurate.

I will explain my lightbulb moment in case it helps someone to understand a bit better what might be going on with their child, or themselves, if they have, like me, spent much of their adult lives completely unaware of themselves.

I was walking home from school after dropping my youngest off. I passed a group of other mothers, all of whom had apparently freshly showered in perfume. The smell was all consuming. I literally had to stop in my tracks and wait until the smell had passed. I felt blinded by the smell, I could see, but couldn't process what I was seeing, I could hear, but couldn't process what I was hearing. I have no idea if anyone spoke to me or waved at me (or any other gestures that may have been appropriate to a large woman standing in the middle of the pavement). It felt like I had frozen, until the smell passed and I regained control of myself, although I did feel incredibly anxious and irritable for an hour or two after.

One of the differences between autistic and non-autistic people is that autistics need to process sensory input manually, the brain takes it in and needs to deal with each sensory assault individually. I think I am usually pretty good at this, although it does mean I am quickly exhausted during social events, where processing must happen alongside talking to people and being aware of what I'm saying and doing, all at the same time. Over the last year I feel that my understanding of this was pretty good, and sensory overload meant too much information going in, yeah, yeah, yeah, I've got it.

But I hadn't got it at all. I had on an academic level, but in a living, breathing way, I hadn't.

My brain, and probably other's like me, has a capacity for processing information, both in a listening and understanding way, but also in the way it takes in sounds, smells and sights. Some days my brain processes things better than other days, so it can cope with more going on. Other days, it cannot cope with as much and I am more likely to be overloaded.

Usually for me, overload for me means I need to be alone and quiet, I feel anxious, I can be angry and snappy and I need to recover.
Occasionally though the overload stops me in my tracks, and this is what led to a greater understanding as to what overload actually is.
In this case, processing the smell of the women (who I'm sure are very nice, if a little on the overpoweringly smelly side) took precedence over everything else. I could only smell that, and my brain went into overdrive to deal with that, leaving the rest frozen in time until it passed.

I really feel this has given me a greater understanding for PDA boy. I have often wondered at the back of my mind if his spacey out moods where he can't hear me or see me are deliberate ploy to avoid interaction, because of course he must be able to hear me call him, and it's only now I've experienced that for myself that I can truly see that he can't. On one level he will hear me, but not in a way that will mean he can hear his name, or understand that my voice, which has become a background blur, is meant for him.

My own diagnosis has proved to be a great way to start to understand my boys better. It doesn't make it easier to meet everyone's needs whilst my own need is to become a hermit, but understanding myself and spotting autism in many aspects of my life has definitely meant that I can pick apart behaviours and attempt to help in a way that I couldn't before I understood.

It does feel odd that I reached the grand old age of 40 without understanding so many aspects of myself, but along with my diagnosis I was equipped with a way to analyse so many incidents throughout my life in order to gain a better understanding of autism.

Understanding how and why sensory overload happens from a personal level feels like another important step, just like my realisation of my processing differences (which I blogged about a few months ago). I am learning to be me, and I hope that it will equip me in helping my family to come through the challenges we face.

Wednesday, 16 November 2016

Neurodisability and Double Standards.

The world is full of double standards, some areas more than others.

One of these areas, in my opinion, is autism and other neurological disabilities. The world for anyone with a disability is more difficult, but the treatment and expectations of people with neurodisabilities show deep seated ignorance and lack of understanding, and this seems more difficult to overcome as people who do not have very close experience of neurodisability, especially with people who mask, it is very difficult to understand how it feels from our perspective.

It is more difficult for a child with neurodisabilities to be supported well. It is more likely that their diagnoses will be ignored or questioned, because it can't be seen, and behaviours are perceived as naughtiness. It seems to be more likely that the person will be dismissed as lazy, manipulative, selfish, a bully, or for parents to have comments thrown at them such as "Oh they've got the wool pulled over your eyes, Mum!", and referrals for parenting classes (if these were classes specifically for autism, or ADHD, this would be fine, but more often than not they are classes to teach you how to be a decent parent, which in many cases is a patronising waste of resources!).

To illustrate this, I'll use incidents that have happened to us, we have a few already.

Before summer, PDA Boy's school was chosen to take part in the OFSTED SEND reviews. As it was such a tiny school, only one other set of parents and I were there to chat to the inspector.
The other child had a mild, physical disability, PDA Boy, obviously, has ASD/PDA.

The difference in our experience of support and understanding was staggering.

The other child had a representative body to ensure his needs were met, a bit like his disability's version of Autism Outreach. This person came into school and advised on how the classroom could be shuffled round to make it more accessible, advice on individual strategies that would help this child. When the school started to slip up with these strategies, this person was onto them immediately to gently but effectively insist that these things must be done, and so they were, and the parents felt their child was happy and well supported.

This was brilliant, a fine example of how things can work well, the child had a knowledgeable advocate who had the power to make the school classroom a comfortable and easily navigable space for them.

And then we came to our experience.

We have had involvement from Autism Outreach, who are amazing and do their job admirably under the circumstances. In my area, the team lost two members, who were not replaced, which meant that the workload increased dramatically for each remaining team member, they had so many children on their caseloads that only the more severely presenting children were prioritised, and the children with lower support needs were squeezed in as and when it was possible to do so.
Their job was made more difficult by staff members who were resistant to using strategies that would benefit their autistic pupils, and the Autism Outreach lady was at pains to make sure I understood that "work in progress" was the best case scenario we were looking at. Staff attitudes towards invisible diability is a major barrier to many pupils' education in this country.

I had to explain to the inspector (well, I didn't have to, but in the interests of being honest, I felt I must) that whilst we liked the school, and it was a better fit for PDA Boy, I was still unhappy with the lack of understanding, and the unwillingness to take on any information that would have helped him to reach his potential. I was unhappy that vital meetings were rendered pointless (I'm sure I've said this before somewhere!) as the headteacher kept interrupting to say "But we can't see it!" which didn't help anyone, and in my opinion made her look a little obstructive and silly.

I couldn't keep count of comments we had such as "he just needs to try harder” and "he's really manipulating you, Mum".

Work in progress for us meant that school would accept helpful printouts and file them away, never to look at them again.

Helpful strategies were used to a point, but there was an overriding impression that PDA Boy was capable of making more effort, and his failure to progress and his behaviour at home were dismissed as his lack of effort and parenting.

The inspector admitted that this was a familiar thing that he was hearing.
I did point out to him as well that a child who had difficulty walking would be encouraged, but it would not be assumed they were faking their walking problems and choosing to be lazy, something that is directly comparable to the assumptions of children with autism and other neurological conditions.

Another incident can be read in my previous post, A "Private" Diagnosis. I have since spoken to the SENCO about this, and been assured that any implication of doubt was not intended. I believe this, but I think it is yet another example of the double standards surrounding ASD. If PDA Boy had diabetes and that was necessary to be on his profile, where his diagnosis came from and whether it was private or through the NHS simply wouldn't be relevant and wouldn't be included on a document explaining how he could be helped, and things to watch out for.

I've also come across these double standards with my oldest. We are certain he also has PDA. He ticks every box in the criteria. He was taken out of school earlier this year as he wasn't coping, was becoming more and more depressed and was so anxious about going into school that he would often be unable to do so.

Home educating has been tricky at times, but on the whole has been very positive. He is incredibly practical and will spend time working on engines, fixing and restoring them. He also occasionally helps out a local farmer, driving tractors and doing other farmy jobs, so we are confident that he is learning skills that will help him in the future.

The double standards lie in others' expectations of him, and how we should be handling things.
Despite his obvious difficulties in reading and writing (at 13 his reading age was given as age 8), we were constantly told how lazy he was, even when it was pointed out to him that tests had identified processing issues, and strategies had been recommended, but this was completely ignored.

When it comes to disability, seeing is believing. When a child has no unusual features which mark them out as different, other people make judgements which they wouldn't if the difficulties were visibly apparent.

Even when a child's difficulties are explained in detail, it is still ok to ignore and treat them as naughty. If this happened with physical disability as often as it did with neurological disabilities, I suspect many schools would be facing accusations of discrimination, but because ASD is invisible, double standards apply.

So what needs to happen? Well, in an ideal world we need more outreach workers so that their workload is manageable. We need to challenge the oh-so-common opinion that an autistic child is choosing to behave in certain ways. We need the aim to move from work in progress (with progress too often being seen as barely significant effort) to schools working to understand a child's needs and as near as possible meet these needs. We need schools to become places where children, all children, can feel welcome, comfortable and able to work to their potential, not as it is now; schools who work towards OFSTED perfection, whose aims are often at odds with a child's needs.

We need better real knowledge of autism and sensory issues, and how they can present. Currently these things are not understood well enough, textbooks are not great mediums to learn about autistic individuals, but too many experts are too entrenched in their textbooks to learn about individuals in their care.

It would be brilliant if schools could have question and answer sessions with autistic people (including the children in their care), with a platform of mutual respect and belief in what is said. So much could be learnt from those of us who could make sense of a lot of behaviour that baffles those whose only experience of ASD is reading books about it.


One of the things that I've read about autism, which are completely at odds with PDA boy's behaviour, is trust.

It is well documented that autistic people tend to be overly trusting of others.

For my son, this could not be further from the truth, and I wonder if this is a PDA thing, or whether my boy has taught himself not to trust.

There are several occasions where PDA boy's sense of trust has been shaped. Over the years he has become distrustful of all teachers and professionals that he comes into contact with, trust and respect must be won.

One of these occasions was when he was 7. PDA boy was introduced to The Incredible 5 Point Scale.
In order for him to not feel different, his whole class were involved in the exercise, drawing little faces ranging from happy to Raaaaargh!

When I picked him up that afternoon, there was a change in PDA boy, he looked relaxed, relieved and happy. He told me that he now had a way of showing people how he felt in school, as he was unable to show any physical signs. As he was telling me about it, his teacher called me in to the classroom to discuss the session, so we could transfer the 5 point scale to using it at home too.

She encouraged PDA boy to tell me about the scale, which he did, telling me that 1 meant he was relaxed and happy, 2 was feeling a little uncomfortable but generally ok, 3 was stressed and needed some help, 4 was very stressed with meltdown inevitable, 5 was meltdown.

The teacher asked how he felt during the school day. PDA boy eloquently and trustingly told her that he always felt at least 3, and often 4 (which I can confirm was true as most days he would,barely reach the car before he was in meltdown). The teacher gaped at him in disbelief and said....

"Well, that's not true! I see you every day and you look fine!"

At that, the relief was wiped off my little boy's face. He became guarded, wary of his teacher. After the meltdown that this caused, he vowed never to tell or show a teacher how he felt ever again, his trust in all of them was lost thanks to that one teacher.

The second main occasion was reserved for the pros.

This was a two pronged fail.

We had a CAMHS appointment lined up. PDA boy was prepared for three weeks about what to expect. He was unwilling, but he didn't run away, he didn't meltdown, so we were good to go. We arrived at the appointment ten minutes early, to allow us to find a parking spot. As I pulled up the handbrake and turned off the car, my mobile rang. It was CAMHS, cancelling the appointment due to the therapist being ill.

This is one of those unavoidable things, but to PDA boy, this was the end of the world, and even now, two or three years later, he is still wary of any arranged appointment in case it's cancelled at the last minute.

He then refused the next two appointments, as he saw no point in winding himself up in order to be let down, and I was disappointed in CAMHS' reaction to this refusal, as if I had somehow allowed and encouraged him to be naughty, rather than the sheer terror that meant he was physically unable to attend.

The third appointment however, he managed to go (with the promise of choosing a toy after the appointment). Whilst there, he (predictably) masked expertly, but he did open up a bit about "going crazy" at home, feeling awful at school and not being able to show it, but he did draw the line about mentioning his regular wishes to kill himself, complete with drawings and demonstrations.

Whilst he didn't open up much, the fact that he did at all was huge, something that I spoke to the therapist later about, and asked her to make sure that his words were believed and acted on, or he would, yet again, lose trust in them. She agreed, but then went on to advise that we stop treating him like an autistic child, and that we bring our discipline methods in line with school's, as he was clearly much happier in school than at home.

So that was that, PDA boy has now lost all trust in CAMHS, because they didn't listen to him, and because they didn't listen to us, his parents, his advocates.

We occasionally see little glimmers of hope, the non-teaching head of year at secondary who keeps an eye open for him but doesn't bring attention to him, is slowly being accepted as a trusted person, ditto the SENCO.

We have to be aware that any relationship outside of close family must be handled slowly and very carefully, any false move is almost certainly irreparable, which is tricky for others to understand.

We hope that in the future PDA boy can learn to build up trust with more people, and understand that people make mistakes which can be fixed.

Sunday, 16 October 2016

A "Private" Diagnosis.

Yesterday I received a letter from school informing me of an upcoming parents' evening. Attached to this was PDA Boy's profile.

The wording of the first paragraph has left me with very mixed feelings and a healthy dose of self doubt.

The first bit of information that a teacher will read about my son is that he has a "Private" diagnosis of autism presenting as PDA. There is then a sentence pointing out that he didn't receive a NHS diagnosis as he was on the cut-off of meeting the criteria.

I don't think I'm being oversensitive (although self doubt is present by the bucket load) in reading that and wondering why there needed to be any reference to the fact that the diagnosis was private, let alone wondering why the word needed to be highlighted. That, coupled with pointing out that PDA Boy failed to be diagnosed through the NHS, points to the fact that it is believed that his diagnosis does not hold the credibility that a NHS diagnosis would, which, given many facts surrounding PDA Boy's diagnosis, and a whole set of double standards, is a very bizarre assumption.

A few years ago, my father was diagnosed with a dodgy knee (that wasn't the official diagnosis by the way) and very quickly had a knee replacement. This was all done privately. In the recovery time following the operation, at no point was it referred to as a "private" operation. There was no need, it was a diagnosis that identified the problem, and an operation to sort it out.

Now, to preempt anyone who's sitting there saying "But the problem with the knee could be physically seen, it's nothing like autism, which can't be seen, there's no comparison", well, you're right, ASD can't be seen, but there are lengthy questionnaires formulated to spot any autistic behaviour, alongside the ADOS assessment, designed to spot differences in social and communicative behaviour. These are carried out by NHS drs and private drs alike, the very same tests. To cast doubt on one diagnosis means to cast doubt over every diagnosis using the ICD10 or DSM5, both which are used in the UK to diagnose autistic children.

The doctors we chose to assess PDA Boy were both extremely experienced in ASD and PDA, far more so than the paediatrician and psychologists we encountered in our local CDC, they are both registered with the BMC, have or still do work within the NHS, both have the experience to spot the very subtle presentation that some children present with, yet their credibility is in doubt?

We have encountered opinions that we bought our boy's diagnosis, but this still doesn't stand up, because any private practitioner diagnosing children because the parents want them to would be investigated and struck off. The reports we received show clear evidence as to how the doctors reached the diagnosis. We had to pay for their expertise, something that was lacking in our NHS experience.

PDA Boy's NHS assessment (as I've discussed before) was a bit of a disaster. He masks, which as any parent of a masker knows, leads to difficulties. PDA Boy passed the threshold on both the DISCO and ADOS elements of his assessment, but his school observations over-rode everything that appeared in those parts of the report, something which the paediatrician and psychologist later admitted, when they accepted the diagnosis and had another look over his reports. Valuable information was left out of the school observations part of the report which would have shown evidence of masking and difficulties in school.

Had we chosen an unregistered doctor, using their own unique, unorthodox method of identifying autism (which some people do, surprisingly), then the use of "private" in a child's profile would be justified. This type of diagnosis is dubious and damaging to all private practitioners.

We felt we had no choice but to seek a private assessment for our son. We couldn't ask for a second opinion, as the case had been left open for two years, and as secondary school transition was coming up, we didn't feel happy to wait that long, so with the full support and understanding from our GP, we sought out doctors who could assess PDA Boy.

This is something I will be addressing at school, but it does leave me wondering why, yet again, autism (and other neurological disabilities) are not held to the same standards of other conditions. Why is it acceptable to doubt a diagnosis, or call it a label, or avoid diagnosis at all costs? PDA Boy's diagnosis may be private, but the evidence of credibility is in his reports and the depth of knowledge shown by the paediatrician and psychologist we paid to see.

To refer to it as a "private" diagnosis simply shows ingrained ignorance surrounding invisible disabilities.

Society, I think I have a problem with you.

It's been over a month since my last post. I have five draft posts which I'm working on, but I need to be in a better frame of mind in order to finish them.

In the meantime, this is something that has been building up and I need to get it off my chest before I can move on to some more positive writing. It's ranty, it's generalising, but from the things I've come across, it is an uncomfortable truth.

In the last month, I have been reading, hearing and watching things that are leaving a very sour taste in my mouth, things which leave me under the impression that people with disabilities are simply a drag on life, on society, an inconvenience that must be borne by parents, communities, society.

Society tells us to be ourselves, as long as it in a way acceptable to them. This blog by DragonRiko explains how this works perfectly.
We have the experience of having a child who ticks many boxes that are considered warning signs for suicide, but because he will only show this behaviour in his safe space (home) and surprisingly (sarcasm alert) won't disclose this information to a stranger who won't accept the words from worried parents, the obvious answer to them, and because they are the professionals They Are Right, is that we are dramatising the whole thing, making it up to cover up our shoddy parenting skills. Society backs this up, and if you need any evidence of that, look at any article about autism in the Daily Mail and go straight to the comments section. It might be claimed that the DM doesn't represent society's views, in my experience it does, but readers of more highbrow papers will find a more palatable way of saying the same thing, but the meaning is still the same.

Text books about autism are usually written by neurotypicals, often including flawed information (male brain anyone? Lack of empathy?) despite autistic people screaming out, desperately trying to help others to understand what it actually feels like to be autistic, and it doesn't always perfectly follow the textbooks. Basic qualifications in autism involve learning the most basic and stereotypical information about autism, no mention of masking or more subtle presentations. I've often thought that a support worker or teacher could learn far more by looking out some blogs by autistic people, or by asking the questions to autistic people in the community.

Autism professionals are very careful to refer to people as with autism rather than autistic, in order to serve their opinions that autistic is offensive, implying that a child or adult might feel defined by their autism (which would apparently be a Very Bad Thing), we are told that having autism is no different to having blond hair, or blue eyes, that it is only a tiny part of who we are, which is bollocks. Being autistic affects every single thing I do, affects everything PDA Boy does, affects everything his older brother does, and that's ok, that's not a bad thing. Except on the whole society perceives it as a problem, so it becomes a bad thing for us as we realise we are somehow defective, rather than accepted as different and appreciated for who we are.

Whilst a child or adult may appear to be functioning at an acceptable level, if they are unable to communicate their distress, and others are not allowed to advocate for them, which so often happens in schools, that person is at a much higher risk of developing severe mental health problems and burnout, which can leave a person very limited and unable to function at all.

On seeking answers, many people in a position of authority; teachers, support workers, autism professionals, will ask a parent if they really want to do this, if they want their child to be labelled. It's obvious that the thought of anyone being diagnosed autistic is abhorrent to the very people who should be the most understanding about how positive a diagnosis can be for a family, even if the only benefit (because let's face it, support isn't exactly easy to come by) is that a family member can be understood and allowed to be who they are, although too often a diagnosis can bring about a search into how to hide the person's autistic traits from society, as they will judge.

Over the years therapies, some life threatening, have been developed with the sole intention to make autistic people appear neurotypical, to attempt to slot autistic people into society, to try to cure them. This isn't led by autistic people themselves, this is led by experts who, whilst on the surface appear to have the autistic person in mind, are forcing NT ideals onto autistics as the only acceptable way to be.

Organisations with the most contact with our children are slaves to functioning labels, with very few exceptions they see a child apparently coping to be the definition of success (credit for this comment must go to another parent in a support group I'm a member of), despite the effects this has on the child and family. For families like mine, this is disastrous news for several reasons:-

A child who masks is generally denied any support, as to teachers/CAMHS/insert other organisation of choice, they are obviously fine, ignoring all evidence that masking exists and is a massive problem to many people.

Support services can be inaccessible as behaviour needs to be witnessed first hand, because parents' accounts are not reliable, and we need to go through more lengthy interrogations and distressing accusations of poor parenting before whoever it is decides that everything's fine, no support necessary.

And the results of this? Well, for my family, the results of this are a family barely coping, but too scared to ask for help for fear of what fresh hell this will unleash onto us. We are a family whose most efficient coping mechanism is to split up PDA Boy and oldest, which in theory sounds easy, but in practice, during the hours when both parents aren't available, or when one parent (usually me) reaches a point where they cannot cope, this is nigh on impossible, and relies on both boys understanding each others' needs, which during melty moments is as improbable as expecting them to understand String Theory. This is what we need help with, but due to the rigid expectations of those who hold the keys to unlock that help, we are not eligible for this support or understanding. We are put in positions where our only hope is to scrimp and save to see someone privately, for diagnosis and other support, but we are still judged for this (please see next post when it has been written!).

Society needs to see bold, obvious signs of disability, or it's assumed that we are faking or not trying hard enough, blue badge holders must prove their disability to the general public, or they may be left nasty letters in their windscreen, you must not walk into a disabled loo looking OK, even though you may have a disability that no-one can see and, shock-horror, you may have a good job and be well dressed and not fit society's narrow definition of what "disabled" looks like, if a person doesn't react in a way that conforms with society's expectations, they are wrong.

Society must be judged on how it treats its most vulnerable members (misquote accredited to various different sources), and right now, the UK needs to buck up. We live in a society where the vulnerable are being more and more marginalised, and the people whose voices are loud enough to be heard don't care and have no respect for those of us who are not round pegs in society's round hole, we are berated and looked down on for not fitting in perfectly, and like so many things, this is simply not good enough.

Sunday, 4 September 2016

Emily Brontë.

Today I read a piece in The Guardian about Emily Brontë, author of Wuthering Heights.

Article here

As more is understood about autism and women, so we can pick out more and more cases of women in history who are likely to have been aspies. And in my mind, this is fabulous. Sharing the knowledge so that more and more people can be aware that autism does not always equal Rainman, or Sheldon Cooper, or any other stereotypical male autist that society has been conditioned to recognise.

Society needs to understand that a diagnosis of autism, or even speculation of historical figures, is not a doom ladened knell of despair, is not a negative reflection on someone's work, is not a reason to think less of someone, is not a label (RAAAARGH! It's NOT a label, it's a DIAGNOSIS! ), does not mean someone is incompetent, is a lesser being or anything like that.

But this is largely how society sees us. So many people have it so, so wrong, and this is distressing for me.

I saw the Guardian article on Facebook, the comments beneath the article were more depressing that I can convey. They were predictable, but still shocking that some apparently intelligent people have such a low opinion of those of us with autism:

(Comments have been slightly changed, but the tone and intent are the same)

Emily Brontë can't have Asperger's because her writing is so good.

Denigrating genius as psychiatric trash. (I reported this comment - assuming that FB cares, that is - this comment was particularly disgusting).

Her understanding of society and humans means she cannot possibly be an aspie.

Ditto emotional depth (something no autistic has apparently).

Why oh why do,we have to label everyone nowadays? (Again, enough with bloody labels!).

I could fill pages with these types of comments, these horrible, ignorant, disablist, offensive comments, but I won't, because life's too short to focus on the tosh spouted by people offended that a beloved author ticked some of the boxes for autism.

However, it is obvious that society is under the wrong impression. Sure some autistic people may appear to lack in empathy, but equally some have too much. We still have emotional depth, and plenty of autistic people make huge successes of themselves supporting others, advocating for their fellow autistics, so somewhere along the line, society has got it wrong, or they are guilty of assuming that everyone with autism is exactly the same.

Rookie mistake, because:

If you've met one person with autism, you've met one person with autism.

Autistic people are a part of society, one could argue that society has been shaped in some part by autism, many of the greatest scientific discoveries were made by people likely to have been autistic.

When it comes to knowledge about autism, the very best people to learn from aren't always the qualified experts, you know, the ones that tell us about lack of empathy and male brains, it's most often the autistic people themselves who are able to give accurate, thoughtful accounts of life on the spectrum. Talks, books, blogs and more that prove our capabilities over and over again.

I think it is so important that we continue to take retrospective looks at history's great and notable people. As humans, we need to do this to further our understanding of ourselves and our peers. As autistic people, it is essential to be able to look in the history books and see that our community are representatives of the great and the good, in fact in many areas, those with autism are over-represented, thinking of the fields of IT, science and possibly the arts and music.

Society has a habit of trampling down those they feel threatened by.
But autism isn't going anywhere, and it's about time society faced up to the fact that we can and will be amazing.
Autistic children and adults are far more likely to be bullied and have low self esteem, we owe it to ourselves to see role models from the past and the present so we can all see that, no matter what society tells us, we are valued members of the human race.
Let autism be recognised and accepted wherever it is.

Emily Brontë may or may not be autistic, we'll never know for sure, but I for one would be thrilled to be a part of the same aspie community as such a talented, insightful, creative author.

Monday, 15 August 2016

Time Machine dreams.

Week four of the summer holidays, and I am writing this post from the loo my secret bunker, the place I go to escape for a few minutes throughout the day, in an attempt to retain some of my sanity.

This is one of those posts that I may regret writing, but it will be an honest one, and hopefully some of you will relate to this and I won't come out of it looking like the world's crappest mother.

Our first two weeks went well, PDA boy was calm, we pootled along with no major catastrophes, and I was smug. I obviously had this PDA parenting malarchy down to a fine art.

Then week three began, and oh Good Lord, I dropped the smug act by Tuesday. PDA boy has started to worry about starting secondary school. And we all know about it. Reassurances are doing nothing, planning a day out has become impossible, but equally staying in doing not a lot is also impossible. Activities get too much, inactivity gets too much. We are at an impassé. Deadlock. We now wait until the strategies start to be more effective again and anxiety lessens. This could be some time.

It is during times like these where I revert to my Time Machine Dreams™.

When I was twelve (and I have to point out I was an incredibly easy teenager, happy to stay at home and do nothing but watch my beloved films whilst playing with toy horses), my ultimate dream was to be a hermit. To live in a house with my dogs, perhaps keep chickens and sheep, but I was very clear that I wanted to be alone.

Obviously I didn't carry out this wish. I met my husband when I was twenty and we now have four children. We have the chickens, the ducks, we had sheep briefly, we now have pigs (and oh my goodness, they are gorgeous! More about them soon).

We go through good patches as a family, and we go through not so good patches, but so far we have a very good track record of coming out of those rough areas, but they are still difficult to navigate without getting too bogged down with everything.

It is times like these when I daydream about what I would do if I had a time machine. And this is where it will sound incredibly selfish, because it wouldn't cross my mind to go and do something wonderful for humanity, in these times I would take myself back twenty years or so and whisper in my younger self's ear that being a hermit might be a wonderful thing. I let my daydream take hold and imagine the house I live in, the space I have, the lack of need for ear plugs, not having to watch Daggerwin on an endless loop, not having the daily forehead slapping moment when I've forgotten to plan tea yet again, not having to worry that my actions have contributed to another meltdown, and feeling close to meltdown myself, not having to plan the finer details of every day whilst simultaneously bearing in mind the boys' own agendas. It's my own private version of It's a Wonderful Life, but I've yet to include a wingless angel.

I think I need these moments of pure selfish fantasy in order to pull myself together and realise that what I have got is ok. More than ok. And given the choice, I wouldn't be without any of them, no matter how tricky things can be, and no matter how exhausting things are.

If I had to choose five people to spend the rest of my life with, to the exclusion of everyone else, it would be my husband and four children, so in that respect I am very lucky. I wouldn't change my life for the world. I wouldn't be without my amazing people.

When I'm at the end of my tether, like now, when my arms and legs are a mess from picking, when my clothes need to be washed but I can't face it yet because they feel right, when my needs are at the bottom of the heap, I need to remind myself that I need some space, I need to de-stress and recharge my batteries, and I reckon that the odd self indulgent dream that helps me to get a temporary grip can only be a good thing. Good for me, and good for my family (as long as I don't actually build said time machine and bog off back to the 1990s).

I'm often reminded that being a parent is difficult, and it is. Being an autistic parent of autistic children is also very hard, particularly when needs clash and we are going through our own individual tricky times. But where we fell today, we have clues to prevent the same happening tomorrow, and hopefully we will succeed and I will regain my irritating smugness at getting it right again.

Tuesday, 9 August 2016

Autism and school.

This is one of the posts I've been trying to write for weeks, inspired by the cygnet course I recently completed.

I'm hoping this works out and I can keep it light and non-ranty, but we'll see. Light and non-ranty aren't strong points of mine!

During the few weeks I attended the cygnet course, (which I think I've said before was generally excellent and well worth being referred to if at all possible), a few things came to light, which made me thoughtful about how autism is perceived by the people in a position of authority, particularly in schools. A few problematic areas, to the course leaders, were not seen as problems to be solved, but simply life, something to endure. But to me, the parent of two boys on the autism spectrum, were issues that have seen one child being removed from school to preserve his failing mental health, and the other so stressed that sometimes he feels suicidal and we can barely cope with his aggression. They are issues which I largely see as avoidable, adjustments that could be made which might make the autistic child's life easier, and would not negatively affect the education of their NT peers at all.

The clearest message of the course was that parents can make the biggest difference for our children. I wholeheartedly agree with this. After all, we know our children best, we spend the most time with them, we love them unconditionally and become their biggest advocates. However, in real life situations, it becomes clear that we are often seen as inconvenient in proceedings, nuisances who want the very best for our children, who want others to understand them like we do, and like they understand themselves. PDA boy has a good grasp as to what overloads him and stresses him out, but as yet he finds it impossible to discuss these things clearly outside of home, so he needs us to communicate on his behalf, something that has proved very tricky.

During the cygnet sessions, the leaders were clear that there were many things that would make our children's lives easier in school, things that could mean better access to education and less overload, presumably leading to fewer meltdowns and disruptive behaviour, but they were also very clear that encouraging an environment to suit all would not be possible, that it would be too much to expect everyone to make the changes necessary.

To name a few of the everyday things that autistic pupils might find difficult (this is obviously not a complete list!):
Noisy and bright lighting
Buzzing smart boards
Noisy lunch times
Unstructured play time

I struggle to understand why these things cannot be limited or adjusted in order to make learning more accessible to autistic pupils. It makes me think of this picture:

Very often, and not deliberately (I hope!), our children are set up to fail, as in the first of the three pictures.
For a child with sensory difficulties, a primary classroom is set up in a way that does not suit them at all. Displays tend to cover every square inch of wall and ceiling space, they are often laminated so they reflect light.
The smart board and overhead projectors are left on throughout lessons, even when they're not being used, the buzz from these can be as painful and distracting as scratching nails down a blackboard.
So many things that make our children's lives more difficult, and no effort to change these things. When a child predictably cannot cope, they are treated as naughty, disruptive and lazy.

The second picture, to me, represents a child facing those same issues, but with teachers who understand and can use ways to help individual children to keep calm or who recognise overload and use strategies to help the child.

The third picture would be a classroom where lights were not fluorescent monstrosities, where displays are limited and walls are not hidden behind a mountain of reflective clutter, where there is a quieter room option for lunchtime, where children can choose to spend their playtime indoors reading, or in a structured game led by a lunchtime assistant, where teachers understand the little things that can affect a child and ensure their use is limited or that the child is allowed to use their own strategies (taking themselves off to a quieter area, being allowed to fiddle with something, not forced to use eye contact) to make things bearable, without fear of judgement or humiliation from peers or teachers.

But as simple as these sound, when I mentioned it to one of the cygnet leaders, I got the impression that you might as well ask all teachers to learn how to speak a little known dialect fluently and deliver lessons in that language. I feel that autism strategies which from our point of view (our point of view being those of us who truly understand our children, or are autistic ourselves) are seen as essential for the child's wellbeing, from a school point of view are so often seen as unnecessary, and pandering to a child who they see as needing a good telling off and that they simply need to try a little bit harder. Or a scenario that also happens is that autism strategies are put into place, but with little thought or recognition of the needs of the individual child. Like the saying goes, when you've met one child with autism, you've met one child with autism. Not all strategies are going to work for all children.

In a local school with a pupil who had a life changing accident, they were able to make adjustments, individual to that child, which enabled them to take part in all lessons, so we know it can be done.

When it comes to autism and other invisible disabilities, it seems it is fair game to not make individually tailored adjustments, in fact mentioning those words "reasonable adjustments" caused one of the cygnet leaders to laugh and comment at what a wooly, useless term it was.

Of course if you choose to look at adjustments as having to cover everyone in the autism community, it would be nigh on impossible to meet everyone's needs in the same place at the same time, but in a mainstream classroom setting with limited numbers of children with special needs, there are adjustments that can be made which will make their individual lives easier, without affecting other children's learning. It was also pointed out to me that there were a number of teachers who didn't believe in invisible disabilities, and that they had enough pressure without having to take on more and learn about their neurodiverse pupils.

Why in 2016 are we accepting this? Autism is here, and it's here to stay. Many of the world's greatest discoveries were arguably made by people on the spectrum. Many of the world's most talented actors, singers, artists, scientists and IT geniuses are neurodiverse. Imagine how much we could do if our children, instead of having burnt out parents fighting endlessly for scant support, had a system which automatically saw them and their NT counterparts treated the same, and given the same potential, in a system geared up to be truly accessible to all, instead of accessible only with a shed-load of strategies to enable certain children to cope. It wouldn't necessarily cost a fortune to implement, and the main thing needed is an attitude shift. But when those in positions to deliver this change are not doing it, or are coming into it with an "I can't possibly change a thing" attitude, it starts to look a bit hopeless for our children.

We need people to stand up to the mighty OFSTED, challenge their criteria that makes life difficult for those with neurological disabilities, and we need to inspire teachers, we need to lose this stigma that autism is negative. And, for that matter, we need to make sure that autism training, whether aimed at schools or at parents, is not delivered in a way that leaves massive gaps in understanding, which I believe it currently does. I think the work of autism outreach workers is amazing, but we need more like them, each with fewer caseloads, so they can lead training in a more individual way, but we do need teachers to be receptive to their knowledge, and not sit in meetings bleating "but we can't see it...." and generally being obstructive, as has been my experience.

The inspirational Tom Bowes AKA Autistic Genius has proposed that the promised increase in autism training should involve actually autistic people. Who better to spot the flaws in the current training information. I would also go a step further and suggest that classrooms should be assessed by autistic people. I personally found PDA boy's classroom incredibly difficult to spend time in, and would have been able to make several suggestions to make it more bearable.

Here is the petition set up by Tom Bowes. (Apologies, blogspot has some sort of glitch which means the iPad turns itself off when I try to insert a link!)

So there, neither light nor non-ranty, and probably disjointed and rambly to boot, but something that's been on my mind a while.

I'll give you a piggy update next post, which I promise will be more lighthearted than this!

Tuesday, 26 July 2016

The PIG Soapbox.

I've let blogging slide lately. There's been a lot to deal with, school trips to be endured, school play to get out of the way, secondary school transition to fret about.

I have started about five blog posts, but without exception they have all been angry and ranty, which isn't the route I want to go down, so they are festering as draft posts until I can give them the calm attention they need.

Today's post will not be ranty at all, and all credit goes to someone who suggested I blogged about something else that is going on in the PDA Soapbox household at the moment:


We are getting pigs, and we are all incredibly excited, some of us so much that rage flares, but on the whole the planning and preparation that is going into getting our first pigs is a very happy time.

Just to give you some background information, we have a very small field a couple of miles from home. It is our haven, the place we go to to escape from the noise and bustle of everyday life. We keep chickens and ducks, and soon we will keep pigs.

In the last couple of years, as we've been fighting and surviving through assessments and diagnoses, and through the trauma of our oldest in school and the decision to home educate him, our field has become something of a chore, we have lost interest, we haven't spent the time up there that we have done in the past. We've all lacked energy and interest.

The decision to keep pigs has brought the energy zinging back. Once again we are spending whole evenings at our field, building fences, fighting off North Yorkshire's most vicious midges, and yesterday, building a pig shelter out of sixteen straw bales.

Usually a task like this would see our oldest (15, almost certainly PDA) trying to take control and putting everyone's backs up and PDA boy doing the same, but ending up throwing punches in frustration. In short, any group activity like this usually ends in meltdowns.

Yesterday went rather differently. The building of the shelter was separated into three parts, and each of us was in charge of a different area each, satisfying our individual control freakery.

Oldest was in charge of the logistics of moving the straw bales from where they had been dropped off to the area we planned to build, I was the master builder, PDA boy was chief basher, hammering thin wooden stakes through the straw bales to keep them anchored to each other and, hopefully, to the ground. Time will tell how successful our attempt is, when there is a resident pig to rub against the carefully placed walls!

For the first time in a long time, we felt like a team. We worked together well, and all have a huge sense of pride in our achievements. The first day of the summer holidays was an epic success.

On to the pigs.

We are getting three pigs. The first is an adult micro pig called Winston. He belongs to friends and is currently living in a place where he isn't being looked after as well as he should, so he is coming to us as soon as we are ready. He is black and about the size of a very fat Labrador.

Of course it would be cruel to keep him all alone, so we feel it is our duty as caring future pig owners to make sure Winston has friends.

Out of the goodness of our hearts, we have found him two little, tiny piglets who are as yet too young to leave their mother. They will join our founding herd of little pigs in eleven days (not that we're counting or anything...).
I'm not going to jinx the process by discussing these, but will update and blog about them when I can.

The start of our summer has been a resounding success. Today we are having a rest day so we have the energy to tackle tomorrow, more fencing and making sure the pig area has no nails left lying around.

I sincerely hope the holiday carries on as well as it has started!

Friday, 8 July 2016

A bizarre proud day post!

Today I have brought my boys home and I am bursting with pride (and relief). You'd think PDA boy had won a Nobel prize of some sort, when in fact my pride is for a very weird reason.

PDA boy has started to show clear signs of demand avoidance in school. (See, I told you it was a weird reason!)

Actually, thinking about it, the last time I felt pride like this was when my daughter moved school in year 2, she went from being a silent little mouse to a complete chatterbox. When my husband and I were told that she talked too much in class, we were quite teary in our pride that she was finally talking in school!

Since PDA boy did his SATs, he has avoided work as much as possible. He will do this by cleverly distracting his teacher, using humour, as well as a more obvious plain refusal to work (in fact I only learnt this week that during his SATs maths exam, he closed the paper and refused to finish it).

In the last couple of weeks, the signs of avoidance have been much clearer. He has started pacing round the room. He is avoiding all academic work and needing more support.

This week at one point, he stood up, shouted "Abracadabra" and got under a table, where he stayed for half an hour.

A welcome side effect of this more obvious demand avoidance has been a more settled boy at home, sure we've had outbursts, but he is taking himself upstairs to play on his Xbox and give himself a chance to wind down after a day, we haven't had the need for 100% supervision that we do when his mask is more firmly in place.

I don't know if pride is a normal reaction for this behaviour, but I'm so proud that he finally feels he can show how he's feeling, and I'm relieved that he's not swearing and punching in school, as that would open up a whole new set of challenges.

In the last few weeks, I feel that PDA boy has really started to come to terms with his diagnosis, and he's talking about it more openly to certain people, and is starting to understand that there are things he can do to help himself feel happier or less overwhelmed. Whether this is a sign of growing maturity, or that he simply needed time to get his head around things, I have no idea, but we are welcoming this phase with open arms.

For so long, fitting in and appearing neurotypical has been PDA boy's priority. Even though this leaves him feeling exhausted, angry and, at times, suicidal, he has put most of his effort into being like every other child in his class.

I truly hope that this new openness continues when he starts secondary school in September, as I feel this will be his big chance to receive the support he so desperately needs.

As he prepares to leave primary school and start this new adventure, I'm finally starting to feel cautiously optimistic about PDA boy's education. Long may it last!

Wednesday, 29 June 2016

The trouble with invisible disabilities.

Like most of my blog posts, this hasn't been planned at all.

Like most of them, an irritating event has triggered a need to write this. Someone (who shall remain nameless) in a position where they should (in my opinion) have a good understanding of invisible disabilities and their effects, made a breathtakingly stupid comment a few days ago.

It has made me consider the trouble with invisible disabilities.

And, well, they're invisible, aren't they?

That's the problem. Certain people find it very difficult to get their heads around the fact that invisible disabilities are There are no obvious clues.

As much as we have all read about some disabilities being invisible, unless you live with it, there's still an assumption that you can somehow tell, hence the number of people saying "well he doesn't look autistic".

PDA boy apparently doesn't look autistic, he doesn't show stereotypically autistic signs in school, and when discussing his support needs the other day, in comparison to children with more visible disabilities; physical disabilities and severe learning difficulties, I was told that PDA boy simply needed to make more effort.

In one sentence, this person has, beyond shadow of a doubt, proved that in order to believe PDA boy's diagnosis, she needs to see its physical manifestation within the confines of school, and until that point she will stick steadfastly to her (wrong) opinion that the extent of his difficulties are because he's not trying hard enough.

It is entirely possible that SEN training in schools leaves out masking, so when teachers and headteachers are informed by parents that their child is having significant problems, they simply don't understand, but when they have information provided again and again, it's very difficult not to take it personally that time and time again this information is ignored. And in ignoring, I feel they are making a choice to fail the child.

I don't know one parent who would go to the effort of advocating for their child's needs if it wasn't 100% necessary. In my day to day life, the need to fight for my son to be understood is the single most frustrating thing I have to do, and I consider that banging my head against a brick wall would be altogether more rewarding.

Having a child with an invisible disability opens up a whole can of worms.

The child has greater expectations on them. Despite their autism, because they can hold it in and appear neurotypical, or because any behaviour they show is easy to mistake for NT naughtiness or silliness, they have neurotypical expectations put upon them which simply cannot be coped with and can spell disaster for an individual child.

Parents are wide open to judgemental looks and comments, and even when dealing with professionals who know about the child's diagnosis, there is still largely an assumption that the child has not been disciplined or parented effectively.

When a child has a physical disability, schools must cater for their needs. A local school put in tremendous effort to make sure life for a newly disabled pupil was as easy as possible, that this young person could continue with her education despite life changing injuries following an accident, and they must be applauded for this.

When a child has an invisible disability, the work involved for parents to even have that disability acknowledged, let alone supported, can be a time consuming nightmare.

Some schools get it right. Some schools spot the potential information resource in parents which they can use to their great advantage. Again, these schools must be applauded. They should be held up as shining examples for others to follow their lead.

Unfortunately some schools do not get it right, parents are relegated to being simply Mum and Dad, irrelevant bystanders in proceedings, with no useful knowledge to share. I don't believe this is done deliberately, it is difficult to make that attitude shift from naughty child to child with support needs, especially if you can't see those needs.

We need a whole new approach to invisible disabilities, these pesky conditions that you can't see, and I have an idea.

No, it's not writing the child's diagnosis on their forehead so it's clear to everyone.

It's a radical idea.

When a child has a disability that is not easily observed, there needs to be a willingness in every school, for every one of our children, to involve that child's parents, who are likely to know the child inside out, and to be open minded enough to understand that what you see isn't always what you get. Seeing isn't always believing.

Diagnoses are not handed out like smarties, so if a child has one, it must be respected, whether it can be seen or not.
If a parent is desperate enough about their child's behaviour to involve outside parties, talking to teachers, asking for referrals, there is a good chance that, for whatever reason, that child has difficulties and it is important to take those difficulties seriously for the sake of the child. To deny support or to ignore a valid diagnosis is to fail that child, and no teacher should be choosing that route.

Involving parents is likely to mean that, as the child's needs are met more effectively (and in PDA boy's case, I've mentioned before that this support would be minimal, require no training and, perhaps most importantly, would be free), behaviour from those individuals improves and their academic ability may improve as anxiety lessens.

Everyone's a winner.

How we get to that point of understanding, well, I'm still working on it.

Tuesday, 28 June 2016

My Masking Child's Diagnosis.

Last week marked the one year anniversary of PDA boy's diagnosis.

PDA boy's diagnosis for us was in two parts. The NHS part and the private part.

Our NHS experience was......interesting, and kept us on our toes. I don't want to rant about the NHS, some things it is brilliant for, and for that I am very grateful - I'd probably be dead several times over without the NHS.

For autism though, it is a bit of a postcode lottery, some areas are brilliant, some not so. I always believe there is room for personal development and growth, particularly in an area where families rely on their drs to have their fingers on the pulse in order to get the understanding and support they need. In some areas though, when it comes to autism, this does not seem to be a priority, which seems very counterproductive, as in many cases a diagnosis is needed before correct strategies will be used, and a child's successful future is reliant on correct strategies being used.

With an autism assessment comes all sorts of intrusive interventions. One thing that struck me was that the expectations of all involved was that my husband and I weren't telling the truth. Questions seemed designed to catch us out, and many of our answers were disregarded. I particularly find this difficult to deal with, I am a lot of things, but a liar isn't one of them.

There were observing professionals visiting PDA boy in school, writing reports, watching his every move, but unfortunately many of the signs they saw were left out of the report that led to his non-diagnosis. My husband and I were told things during conversation when we were being quizzed at our DISCO (diagnostic interview for social and communication disorders), we were told that PDA boy spent most of the lesson with his head on the desk, not working. We were told he made a very literal joke that fell flat. We were told that after being moved to another desk to work, his communication with another boy was off kilter. We were told things that were consistent with masking, watching his peers, reacting a fraction later than others and louder than others. We found out after that it had been noted that his facial expressions in lesson time tended to be very blank.

None of this was included in his report, which ended up a strange document to read, with the ADOS and DISCO sections showing issues, but each area was summed up in favour of school observations. "No difficulty in this area".

The results of both the DISCO and his ADOS (autism diagnostic observation schedule) assessment were ignored in favour of a vote of "No, we can't see anything" by PDA boy's teachers, a parent support advisor and a lady from enhanced mainstream services, all of whom had only seen him in school where he masked expertly. They simply had no knowledge of how well some children can cover up how they're really feeling,

To top this, at a later meeting with the autism co-ordinator at the CDC, I was clearly told that PDA boy's issues were down to parenting, that my husband and I must both deal with him together at all times to show a united front (not sure what was supposed to happen with our other three children). I came out of that appointment broken. My confidence, grown from knowing how much things had improved at home for using PDA strategies, was in tatters.

Our NHS assessment period was a very dark time for us all, and one that I would be very reluctant to go through again should another of our children need it.

It took a few weeks to work through it all, doubting ourselves, unsure of the things that we knew were true.

We then looked into alternatives.

We approached The Elizabeth Newson Centre, who specialise in PDA, to find that they were fully booked and had closed their waiting list until they had caught up with themselves.

They recommended Dr Jo Jones (consultant paediatrician) and Dr Judy Eaton (consultant clinical psychologist).

Contacting them was simple and we had quickly arranged an appointment with only a few weeks to wait.

From contacting Dr Jo and Dr Judy, we then had a nine week wait, which was agonising. We went over and over PDA boy's reports, we doubted ourselves, we fully expected to be faced with more professionals who doubted what we said.

Thankfully, we couldn't have been more wrong.

The appointment was arranged for the afternoon of Thursday the 25th June. We had a three hour drive ahead of us, with a reluctant boy for whom the only positives of the trip were a day off school and a mega three hour game of mini punch, which he won by a mile after spotting a car transporter with (according to him) around fifty minis on board.

We met Jo and Judy and were brought into Jo's beautiful kitchen where my husband and I would talk to Jo.
After initial introductions, PDA boy was taken into another room where Judy carried out a WISC assessment (as he had already had an ADOS assessment which was over the threshold of autism).

My husband and I stayed with Jo in the kitchen where she asked us questions about PDA boy's history.

One of the problems with the NHS assessment was that both my husband and I are wafflers. We were so desperate to give as much relevant information for questions worded ambiguously that our DISCO interview took an hour and a half longer than predicted, and with hindsight, we still probably didn't give the psychologist the information she needed.

Jo was amazing at getting the exact information she needed, she asked questions then explained exactly what she meant, she stopped us when our ramblings were irrelevant, and recognised when we didn't understand a question and put it in a way we (and by we, I mean I) could understand more clearly.

In an hour and a half, we covered more, and Jo had more useful information than in the many, many hours we'd spent talking to the various professionals throughout the NHS assessment period.

After our interview and PDA boy's assessment, Dr Jo then carried out a physical examination on the boy, following which we went into the garden whilst the two doctors discussed the case.

My husband and I were called back in to chat, leaving PDA boy playing on the trampoline and watching a bees nest in an old apple tree.

The verdict was in. Autism with a presentation of pathological demand avoidance.

The relief was immense. The years of questioning ourselves and what the family was going through were over. Not only that, Judy had spotted how angry the boy was, despite him masking and mostly complying, she could clearly see that beneath his mask he was barely suppressing his anger. This felt like a major breakthrough. Someone outside of his immediate family had spotted what we see.

Both reports were received within a week of the appointment. Unlike the NHS reports, we fully recognised our son in the words of the two doctors, nothing was twisted, nothing ignored, there was nothing we could scratch our heads at, puzzled which child they had assessed. This was all 100% PDA boy.

I have such positive memories of this assessment. For the first time in years, we had the opportunity to see two doctors who believed what we were telling them, who didn't try to twist our words in a bid to prove that he wasn't autistic, merely badly parented.

We waited a couple of weeks to tell PDA boy about his diagnosis, to be honest it took that long for him to recover from the long journey and the assessment, so telling him earlier wasn't an option.

He didn't take the news well, and that summer, behaviour wise, as he processed this information, was very difficult.

A year on though, I can honestly say that the diagnosis has been very positive. PDA boy no longer believes he is evil or the bad one in the family, he does still go through difficult times and we are still finding it tricky to have appropriate support put in place, but finally, he is starting to understand who he is, and how to handle things.

He will chat happily to certain people about being autistic, and will answer their questions eloquently. At school though, he is still a closed book.

Knowing he has PDA, and I suppose having it written down as a diagnosis, has made a huge difference to us as parents. We can use PDA strategies wihout self doubt, knowing we are doing the right thing. We can ignore those intent on pointing out that he's not autistic, we're just pandering to him. We can put things into place to help him to cope following a day at school, we can advocate for him confidently.

If we ever get to a point where another of our children needs to be assessed, I think we would bypass the NHS entirely if we could, because I don't personally know if I could cope with another year of interrogations and not being believed at all.

If it were needed, I would be booking my child to be assessed by Dr Jo and Dr Judy, knowing full well that if that child had autism they would be the ones to spot it.

As you can probably tell by everything that I've written, I would recommend them both in a heartbeat.

Sunday, 19 June 2016

Processing words.

I apologise in advance as this is another me, me, me post, but it fits best in this blog as 1) it will help me to process this enormous lightbulb moment that I have had and 2) it may help some of you understand better the processing problems that our autistic loved ones may have. As I have found before, now I've had this Eureka moment when it comes to my own processing problems, I can't explain it from someone else's point of view.

I also apologise because, on previewing this, it is very long.

Last week, as I've mentioned before, I attended the second session of Cygnet training. I'll admit, I have gone into these sessions knowing that I have researched autism for years, and knowing that when it comes to my boys, I know them and their autism better than any expert, so I did not expect to learn much. I certainly did not go into it expecting to have a massive, earth shaking revelation about myself.

The session was about communication, and reasons why people on the spectrum have problems communicating with others (yeah, yeah, yeah, I've read it all before, I know loads about this - I know, arrogant much?).

Specifically, my revelation was about processing information. (Again, yeah, yeah, I've read widely, I really don't think you can teach me anything about this - what an idiot I am!).

I've read about people on the autistic spectrum needing time to process questions and information, but on some level I now realise that I didn't fully understand what it meant. I have never, ever realised that this applies to me. I've taken it into account when talking to PDA boy and his older brother, and it helps, but not once in everything I've read have I ever been able to apply it to myself, until last Wednesday.

I, and many others on the autistic spectrum, have a constant dialogue going on in my head, going over conversations I've had, conversations I will have, and conversations I will never have. Most of what I say has happened before in my head, so during real conversations it comes out instantly and fluently. It is rehearsed and, to a certain extent, scripted. I always assumed that everyone does this, and I'm probably right to a certain extent, but with autistic people it can be constant and exhausting, and the need to have these planned answers is important. Take small talk for example, pointless conversations, but something that NTs value. I can pass as a decent small talker because I will pay attention to the weather and current news because these are the things that will be chatted about, I can rehearse these things in my head and I'm ready for a passing "ooh, it's supposed to be summer" (It is indeed, it's June and it's bloody freezing!).

I've known for a long time that I do this conversation rehearsal, so this wasn't the lightbulb moment.

At the cygnet course, one of the course leaders was talking about processing times, I can't remember exactly what she said, but it was along the lines of "Don't forget, if your child gives you a different answer to the one you're expecting, they may not have had time to process the question". (Sorry, I know this doesn't sound like a great revealing moment, you'd expect something profound and deep!). I heard this, and at the time it didn't mean any more than an interesting observation of our childrens' thought processes.

After the course I drove home and went through the things that had been said, the things I had said (Oh god, had I said the wrong thing? Had I annoyed anyone?).

I arrived home and made myself a cup of tea and sat down quietly to recover from the stresses of being in a room with fifteen other people, and it suddenly hit me, like a non-lethal bolt of lightning.

If you give a different answer to the one expected, you may not have had time to process the question.

And the realisation hit me.

I do this.

How have I never known this about myself?

If I am having a conversation, and a question is asked that I'm not prepared for, my brain will search for a Best Fit answer. It may do the job and I get away with it. Or it doesn't quite fit and it looks like I'm either misunderstanding the question or it looks like I'm deliberately evading a tricky question. Or if someone makes a jokey or unexpected comment, I will stand and stare, my brain working hard to come up with something, anything, whilst I stand appearing gormless and humourless.

I believe this may explain some of the difficulties I had during PDA boy's assessments, and more recently with CAMHS.

One question that stands out was from our CAMHS therapist.

"What do you want us to do"

At the time, I was put on the spot, I vaguely knew the answer, but I couldn't find the words. I felt pressure to answer, time is limited, so, rather like a Google search, I put in the key words and my brain found the closest thing to an answer, but it was just useless spiel about PDA boy's difficulties one more time. CAMHS believe we are obstructive, and I think my, perhaps inappropriate, responses have unfortunately confirmed this. I did disclose my autism to the CAMHS therapist, but as I already know that their knowledge and understanding of autism is limited, I shouldn't be surprised that they didn't understand that this may be an issue for some of their patients' parents.

I did eventually think of an answer, but it was days too late.

Since first learning about autism and how it affects my boys, and later realising that I was recognising myself, and going through to my own assessment and diagnosis, this realisation that I do have problems with processing information has been the most mind blowing.

How on earth have I got to forty years old without realising that I need time, sometimes a lot of time, to process information?

How have I not realised that the answers I was so often giving didn't quite fit the question I was asked? It seems so glaringly obvious now.

I want to approach all the people involved in PDA boy's assessments and ask them to recall how I came across in all those difficult, time consuming appointments, but I won't because that's not their job, but it would be interesting to see if their recollections confirm what I have only just learnt about myself. I can remember giving rambling long answers to open ended questions, because I wasn't sure what they wanted to know, so I gave as much detail as possible to make sure I covered what they were answering. Again, I feel sure this was down to processing problems.

During PDA boy's private assessment (which I will talk about next week), the paediatrician we saw, Dr Jo Jones, was very good at asking questions. When I started to ramble, she would stop me saying "no, I don't need all that, I want to know abc", when I was launching into the whole alphabet. She would then explain exactly what she wanted to know, thus saving time and meaning that in the three hours we spent with her, we covered far more than we did within several hours of speaking to people for the NHS assessments. I suspect that she was experienced with parents who probably unknowingly have the same processing issues.

Knowing this about myself is huge.

I can see how I played a part in the failed support through CAMHS, and how the boy's assessments were far harder than they should have been, so my insistence that we were failed by the services supposed to help was not quite as I have perceived it. My own answers probably caused misunderstandings and assumptions about me and my agenda, because looking back I wonder if I did come across as fake, and my answers scripted. I have only ever been honest in these situations, and have been so upset that most people we have worked with have not believed me, but now I think I have the explanation.

My answers have always, always been truthful, but when they come across as rehearsed, it maybe sowed seeds of doubt.

So I intend to take this new information about myself and learn from it. If I'm asked a question, I will stop and think. I will try not to feel panicked into giving an answer as quickly as possible. If necessary I will write the question down and ask if I can give the answer when I've had time to think about it.

I will use this knowledge to be more understanding of my sons' processing difficulties. I will not get frustrated at them, but I will give them more time, and approach things in a way that is more straightforward and requires less complex processing.

I have learnt a big lesson as well. I went into those Cygnet sessions feeling that I knew it, and couldn't possibly learn, but I have. I hope I haven't come across as a smug know-it-all, but will approach these things with a far more open mind in future.

Sunday, 12 June 2016

The masking child: Book club analogy.

Let's assume you know nothing about masking. You have no experience of a child who is completely different in the safety of their own home.

How do you describe them to someone else?

I have explained many times to disbelieving people, including experts, what is going on, but my words dont work, I can't get it across effectively enough for them to understand.

So I have come up with an analogy which I think will help the most reluctant observer to understand what some of us go through every day. It may be brief (you'll be pleased to hear!), but I hope others with a masking child will find it a helpful way to explain to their families and friends, and even their child's teachers and other experts involved in their care.

The Book Club

It's the last Friday of the month. Book club night has rolled round quickly.

You have diligently read the month's chosen book, Neurotribes, by Steve Silberman, full of eye opening information giving you an insight into autism and its history.

You take your contribution; a bottle of wine, and drive to the venue where you will meet your fellow Book Clubees.

Sitting in the cosy lounge, the fire flickering brightly, shoes kicked off as you sit back in the comfortable settee, you chat about your week, biding your time until the point where you can discuss in depth the book that you devoted so much energy to.

Lisa starts the ball rolling. You hold your breath, waiting to hear that they also found the book gripping, and were unable to put it down, causing several sleepless nights.

Lisa gives a relaxed smile "Well, I just loved it," Everyone smiles in response.

Lisa continues "the protagonist was gorgeous, even if he was grumpy to start off with, it was so predictable that they'd end up together."

You are confused. This is not the plot of the book that you spent hours reading. Where's Leo Kanner? Hans Asperger?

Izzy's turn now "I know, and the wedding, so lovely, beautiful descriptions, I really felt I was there!"

You eye them up, is this a wind up?

Now it's your turn. "Well, i feel I've really learnt a lot about autism...."

"What?" Everyone turns to stare at you. You feel uncomfortable.

As you continue to give your opinion, you slowly realise that you haven't read the same book as your friends. You ask to have a look at Lisa's copy of the book. You flick through it and see that the main body of text is written in code. Puzzled, you look at the cover of the book.

Realisation dawns.

The dust jacket of their copies of Neurotribes has been printed with the synopsis from Katie Fforde's latest best seller.

You are the only one who has been able to read the book.

You are disappointed. You came prepared to discuss the finer points of peoples experience of autism, you put time and effort into making sure that you could talk knowledgably about this chosen book.

But not only have they not been able to read the book, they have read a synopsis of a different book altogether, one that bears no resemblance whatsoever to the book that you finished. They are also insisting that they have read the book.

You are frustrated.

You are humiliated. Not once did they acknowledge that yes, you alone had read that bloody book, and you are actually the only person in the room who could talk with any authority about that book, yet yours is the voice they ignore.

The End

So there you go. I have lost count of the number of times when some well-meaning expert will briefly observe PDA boy and tell me authoritatively that he is fine, when I know full well he isn't.

PDA boy is Neurotribes, compared with the expert's printer errored synopsis on the dust jacket. They are reading something else entirely in that brief synopsis, but still insisting that this is him. One brief snapshot in all his masking glory, without once taking the time to listen to those who have actually read the book in full, and they still know him better than I do.

I'm not blaming anyone, but if you are unable to read the book, only the fluffy paragraphs on the jacket, you do not then base your entire knowledge of a modern classic on that synopsis.

You either admit that you can't read it and ask for someone who has to explain it, or you take the time to learn the code, then you can read it yourself. You don't turn round to the one person who has read it and tell them they've got it all wrong.