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.