Wednesday, 11 October 2017


Waiting for a Leeds-bound train and trying to control the building anxiety (the ticket machine is out of order again!) it feels a good time to write. Of course it should be a good time to read one of the many books or articles I have with me, but, well, procrastination. 

Anxiety is something most of our PDA children are familiar with, even if they or others around them don't recognise it as such. 
Anxiety can often look like fear; trembling and crying are easy to recognise. Hiding is easy to spot too. 
Less easy to identify is anger, lashing out and throwing things. 
In my sons and myself I recognise the surge of adrenaline, fight or flight, and with time it becomes easier to see the various ways in which anxiety presents itself. 

PDA boy will be angry, a sudden flash of temper or a slowly gathering storm. There are times when we spot the signs and successfully intervene with various strategies. There are other times where we miss the signs and we batten down the hatches and ride out the inevitable meltdown. 
In public his anxiety looks like extreme giddiness, silly and impulsive behaviour. 

His older brother will appear to be obnoxious, needing to control everyone and everything around him, alongside refusal to do anything that might help him. 

My own anxiety (and I find it much easier to describe my own, after all, I am experiencing it!) presents in various ways. 
Over the years my body has tricked me with various worrying ailments, and as soon as I've worked out I'm not really dying, it's anxiety, it moves on to another ailment. Facial numbness, numb, tingling limbs, chest pain, breathlessness, all take it in turns to keep me on my toes. 

I have asthma, or maybe I don't. Or maybe I have mild asthma with symptoms highly excacurbated by stress, I don't know, but I do know that the times I have struggled most with "asthma" have been the stressful times, periods of change and, with the benefit of hindsight, anxiety driven.  

It can be difficult to understand the relationship between mental health and physical health. For years my GP suspected my breathing problems were stress related, and even though I had all the evidence I needed to join the dots and agree, I didn't until over a year ago, when I was diagnosed as autistic, and finally understood my anxiety better. 
I was referred for breathing physiotherapist (I had no idea this was even a thing!) who proclaimed that all my ailments were linked to poor breathing techniques. 

Breathing techniques? We all breathe the same don't we? In and out? Easy peasy. 

Apparently not. I've spent much of my life hyperventilating without even realising. All my anxiety symptoms (numbness, chest pain etc) can be attributed to my crap breathing. Being taught to breathe properly has allowed me to somewhat control my anxiety better, and being able to identify my tigers gives me clues to spot my children's triggers, and help them through anxious episodes. 

Of course there are times when breathing techniques aren't enough, they help, but not enough. 

These are the times when I need more strategies. 
Currently, sitting on a train (yes, I'm on the right train, headed to the right station, I asked) I'm relying on Tchaikovsky on a loop (my Wrexham music, the track that saw me take my first solo adulting trip), I'm writing, which is distracting, and I'm fighting the urge to turn round at Leeds and come home. 

When the boys (and the girl) are struggling it's sometimes difficult to help them efficiently. We try to talk regularly about anxiety, what it feels like, how to recognise it before it takes hold, and how to ease it. This has to be considered a work in progress though, it may take a while before we see positive results. 

This is seen as unhelpful by some, surely talking about it is somehow accepting and encouraging anxiety? 
If you struggle with anxiety though, you'll know it's not something that goes away if you ignore it, much as that would be lovely, it just doesn't work like that. 
We have a much better track record with acknowledging anxiety and working with it. 
It's far better to accept that those terrifying pains are anxiety and there are things that can be done to help. Before I knew I had anxiety (which for me is completely tangled up with autism), I genuinely thought I was dying on a regular basis. Ignoring it isn't possible when you're in the middle of an attack. 

In my family there are various triggers. For the boys any extreme emotion sets them off, change, too much noise, transitions, being hungry, the list goes on. Prevention is better than dealing with it in the throes of anxiety, but can be easier said than done with two boys together constantly. 
Triggers for me include too much noise, strong smells, not enough time alone, a long to-do list. 

Strategies that we try to use are trying to identify the cause and rectify it. If it's too noisy, earplugs. Hungry? Eat something. 
If it's not possible to sort it out, we need to go down an individual route. PDA boy needs activity, trampolining, wood chopping, something that uses his muscles. Oldest needs to be alone. I need to be alone. 
It's difficult to meet everyone's needs at the same time, but we do all we can. We do the best we can. 

I've now reached Leeds. I'm waiting for the train to Sheffield. This is a journey I've done loads, but I'm still getting myself worked up into an anxious wreck. I've left propranolol at home, which is a shame. In the end I need to remind myself that taking the train is far better than risking driving in an unfamiliar place, and I know I will be ok, I just need to get through the scary stuff and it will be fine. 

Over sharing for the day done, thanks for reading :)

Tuesday, 10 October 2017

World Mental Health Day.

Today is world mental health day. So here's a quick post about mental health.

We all suffer from mental health problems in my family, its an everyday part of who we are. Some days are better than others, some days it feels miraculous that we even get through at all.

Sometimes we manage to pootle along happily, and everything seems ok, sometimes you can feel it building up and try desperately to keep it at bay, then other times it comes up and floors you before you know what's happening.

Dealing with it can be difficult when there are so many misunderstandings surrounding mental health.  The stigma prevents it from being taken as seriously as physical health problems. Strategies and medications can be dismissed as crutches, bizarrely, considering that actual crutches would never be written off in such a disparaging way.
It's assumed that we can positively think our way out of being depressed, or that we should simply stop being anxious (Ha! I wish!).

I am struggling with anxiety right now.
Life is tricky at the moment, home life is hard, with too much to deal with; tricky relationships, university to attend, delayed trains to catch, schools to look round, noise, chaos, noise (again), all which conspire together to make sure my anxiety levels are high. Change, sensory issues and unsurety team up to make anxiety my constant companion.

There are strategies that work, sensory strategies (earplugs, listening to music, silence (oh silence, how I miss you), heavy blankets) and avoidance tactics (avoiding too many social occasions, choosing to spend time with people who do not put pressure on you to be a better person all the time).

Allowing time to work out how mental health affects you and how to deal with it is traditionally seen as navel gazing, and contributing to the problem, leading to (un)helpful suggestions, like "get some fresh air" which may work as part of a range of strategies for some people, but at some points in life, the pressure to get out there adds to team anxiety, and doesn't help. Personally, I find these days are best spent under a blanket with a good book, shutting out the rest of the world, but with two boys around, these days this is easier said than done.
Acknowledging anxiety and working with it, far from being navel gazing, actually works better in terms of management. I have propranolol for the very bad days, when very careful planning and sensory strategies aren't working.

The World Health Organisation currently puts mental health as affecting one in four of us, 450 million of us worldwide (roughly 7 times the population of the U.K. alone - my maths is terrible though, so please don't quote me on this!). It's clear that whatever we are going through, we are not alone, there are others sharing our experiences.
We owe it to ourselves to talk openly about how mental health affects us, and how we manage day to day, and by doing this hopefully we can erase the stigma of mental health problems, and, for that matter, of neurodisabilities like autism and ADHD.

As long as no-one talks there will still be a stigma surrounding mental health. As long as the loudest voice is inaccurate, misleading or lacking in understanding, there will be a stigma.

So there you go, nice and short.
Earplugs in now, ready to run the gauntlet of school pick up!
Have a wonderful day :)

Saturday, 12 August 2017

Obsessions, passions, special interests and hobbies.

I am experiencing a perfect combination of passions, which has led to a need to write about it, what leads to an obsession, how it feels, welcome and less welcome side effects. There is a strong chance that at some point I'll read this back and think "God, what a wanker!", but nevertheless, here goes....

There is often discussion about the language surrounding special interests, and comparisons to hobbies. Personally I think "hobbies" doesn't come close enough to even describe a fifth of the emotions involved in a good old obsession. I have had hobbies, pastimes that hold my interest and keep me occupied, that I look forward to. An obsession, an intense passion in something (and it can be anything) takes up so much of me that it needs to be categorised seperately.

I have different types of obsessions, they follow familiar patterns, but until I was diagnosed last year it wasn't possible for me to see them for what they are, I simply thought, along with many other quirks that make me Me, that this was yet another area that I wasn't trying hard enough to overcome, I was allowing myself to be caught up in it all and therefore failing again.

The main rule of obsessions for me is that they are like cats.
They come to you, they choose you.
Believe me, I have tried to muster up a passion for running or dieting, and it just ain't happening.
Instead my brain latches onto random, inexplicable things that hold it captive for a while.

Obsessions take different forms.
(I feel I should qualify here that I can't talk for all autistic individuals, these are my experiences which others may or may not share)

There are slow burning ones that stand the test of time, that may span many years, waxing and waning as and when I have time available to devote to them, always there to turn to, and always on my list of strategies to control anxiety. I am in control of these, and they leave a sense of quiet peace, that everything is ok in the world.

The next type I have are with objects. Time and time again I have been struck with the knowledge that buying a certain object, be it a pair of walking boots, a certain book, a gadget, even ice skates at one point, will change my life for the better, will make me a greater person and more interesting. Of course this doesn't happen, but during the time of researching and collecting screenshots and reviews of the item, I am unaware of this.

My least favourite ones, that can lead to distress and meltdowns, are The Causes. Every now and again, there will be a cause that catches my attention, it may be an ongoing news story, it may be political, it is usually messy, and I cannot see it until I'm over it, when I'm ashamed at assuming everyone has to know, in great depth, why my opinion is right. In the midst of these I feel a need to immerse myself and share as much as I can to prove the point. Afterwards I want to hide, and often lie low for a few weeks, and hope those I have annoyed have short memories.

My very favourite ones are the short-lived intense ones that last a week or so but leave lasting, fond memories that can be used to conjure up the extreme happiness that they bring. These are usually pieces of music that will be interlinked with a specific hope or dream, often classical, sometimes something unexpected. During these times my anxiety lessens, I have energy and I feel so positive for the future (things that are usually low in supply) and I want the feeling to last forever. There is a downside. Of course there's a downside. When going through these passions, my ability to start and complete tasks diminishes, I switch off from family duties and, for a couple of days, live in a world of my own. This annoys family members as I struggle to hear them and participate in family life, and leads to frustration as I (selfishly) would rather not partake in conversation with others. I've often wondered if these phases are driven by self preservation, as they always coincide with long drawn out periods of stress, where I feel utter despair and a sense of conviction that this time will surely be the time when I have a breakdown or die from stress related somethingness. Then along comes a jaunty tune or song to listen to on a loop that allows me to switch off and recover. I honestly think without these times life would be unbearable. Once it has passed the piece will remain a firm favourite, but will lack the intensity that it once had.

So on to today's perfect storm of passions, which has left me happier and more content than I've been in months. I would have liked to have added photos, but the family laptop is once again broken, and blogspot has some limitations when used on an iPad. When all is restored to working order I will come back and add some pictures.

Luckily there is no Cause at the moment, so I am free to be calm and content.
I have recently bought a pair of walking boots that I have coveted for a while (actually that's a bit of a lie, I have coveted generic walking boots for a while, but soon realised these were often dull, until I found my beautiful red boots which arrived last week).
The clouds tonight have been beautiful, a peaceful presence during a solitary dog walk.
And I have a new song obsession. I'll go into a little more detail here, because without background I will look like a middle aged saddo. Actually, even with an explanation I will, but I'm going to give it anyway!
We bought Moana this week. I'm not a huge Disney fan, but for some reason this has grabbed me, perhaps because its purchase coincided with a lull in tricky behaviour from the boys, perhaps because the story of a young woman learning her meaning of life has vague parallels with a not so young woman finally having the opportunity to find herself (unfortunately not in such beautiful surroundings).
One of the songs, You're Welcome, is the song I have been listening to on repeat. I liked it, but it wasn't until seeing a video of it being performed live that it really settled in. Seeing the passion and enjoyment from the conductor was wonderful, and gives me hope that at some point in my life, I will be able to find work in something that gives me that joy.

So there, that's why right now I am happier than I've been in ages.
Over the course of the last few years the occasional person has suggested that we curtail PDA boy's passions somewhat. Having a better understanding of my own, I can now say with some force that I will never limit his interests. A life spent following your passions must be the best life there is.

Sunday, 16 July 2017

Harrogate Branch NAS Conference 2017

It's been a while since I've written anything, having two boys at home is a little time consuming and overwhelming, which has meant a bit of a knock to my mental health and a need for various strategies to manage things (including a solo weekend away - ice cream, crisps and prosecco in bed for tea - highly recommend it!). This has also led to me deactivating Facebook for the time being and abandoning other projects to make head space for family life.

A couple of days ago I attended the Harrogate branch NAS conference, which also marked the tenth anniversary of the branch.

The event took place in a local school which easily accommodated various stall holders, speakers and attendees, and was very well organised.

Proceedings started with a brief talk from Mark Lever, CEO of the NAS, who explained some of the campaigns that are currently running, and some of the ins and outs of the finances of the charity. It was good to see him attend a local event. During the morning break he left his belongings on my briefly unattended seat, which set off a near panic attack, tears and very nearly an early exit for me, so he has a slight black mark against him for that 😂, apart from that he seemed alright.

Following his talk, we then heard from the Autism Strategy Manager for Tees Esk and Wear Valley NHS trust. Later in the day we also heard from local representatives from chilren's and adult's autism services. I'm going to talk briefly about both of these together.
I am perhaps not the best person to speak about these, as I can be very opinionated about the role of certain professionals within the public sector, most probably because we didn't have very positive experiences to go by (although my own diagnosis through adult services out of area was very efficient and positive). I found these particular talks quite frustrating, as the emphasis was very much on how good the services are, and the content self-congratulating, which I find galling when so many people's experiences through using these services can be distressing. I get the impression though that they think the services they offer are very good and have a big impact locally, but this certainly goes against anecdotal reports from many service users.
I would prefer an approach that goes something like "We have received xyz feedback, and we realise that improvement is needed, so this is what we plan to do, please continue letting us know what needs to happen, and what we're getting right". I would also be interested in hearing more about their training course content, as going by experience, even though training courses can be freely available, the content and delivery is often poor and does not take into account the needs of the autistic people themselves. I'm happy to be corrected here though, as my experience here may be a year or so in the past and things may have improved.
At one point a rather distressed mother interrupted a presentation to ask for help for her daughter, who was refused support through these services as she "looked fine". In this day and age we should no longer be hearing any stories of this kind, yet so many of us have faced this dismissive and damaging attitude.

On to the highlights of the day now, which may not necessarily be in order of appearance.

Lunch. More specifically, flapjacks. Ashville College's catering department outdid themselves when it came to the flapjacks. The rest of the buffet lunch was excellent, with the added bonus of pudding being available at the same time as the sandwiches (I am easily pleased!).

A talk by Rob Knox, from Rob Knox Associates, with many years of experience through education, spoke about various aspects of autism, he had some interesting views which were good to hear.

A local autistic committee member spoke about their experience of bullying in school, this was obviously an emotional subject to talk about, and so much of what they said resonated, both the bullying itself and the attitudes from those who should be dealing with it. Unfortunately, it highlighted the fact that in the last few decades, things really haven't changed in this respect. I think bullying is something I will tackle in a blog post at some point, but I suspect it will be a difficult one to write.

Specialist speech and language therapist Gina Davies delivered an outstanding speech about her work with autistic children and young people. It's so good to hear from people who have such a good understanding of autism. I highly recommend a Google to see the work she is doing, and if you do get the chance to hear her speak you won't be disappointed.
She did mention how polite parents tended to be, in the face of professionals offering tried-and-failed methods, which was a bit of a lightbulb moment for me in realising that my bluntness and refusal to try strategies that had already proved useless probably annoyed the professionals who felt that they had all the answers. Maybe one day I will develop some diplomacy when faced with pros who think that a twenty minute observation session means they know exactly how to handle my child....

The day finished with a talk by Dean Beadle. He warned us that he would be positive, and he really was. He was a joy to listen to, and firmly knocked on the head the myth that autistic people don't have a sense of humour. We really need more autistic voices, to drown out the relentlessly negative and patronising NT Expert voices, who so often miss the point of what it is to be autistic.
I urge any of you to grab any opportunity to hear Dean Beadle speak, he was a breath of fresh air, and showed a much more realistic and living view of autism than the behavioural aspects and resulting management that are usually highlighted.

I thoroughly enjoyed the whole day and can't wait for the 11th annual conference. Hope one day I can speak at one (tiny hint if anyone from Harrogate NAS reads this - specialist subjects include masking children in school - the whys, and how to support them, plus the positives of adult diagnosis. Specialist subjects also include clouds and chickens, but these might not appeal!).

Friday, 19 May 2017

Autistic Siblings. Help!

If you have an autistic child, current estimations say that you have a one in five chance of having another. To many of us with autistic children, this comes as no surprise, most parents of autistic children I know have second and even third children who are also autistic, others have children who are decidedly quirky, although they may not meet the criteria for a diagnosis.

This often means that plenty of advice, aimed at parenting one autistic child, can be more difficult to implement.

Now we don't have school to manage, our biggest challenge is having two PDA boys together. Individually they are more receptive to the various PDA and ASD strategies that we use, when together it is far more difficult to manage their anxiety and to reach a point where strategies can take any effect.

Neither boy tolerates the other well. I believe this is due to a few things. Sensory overwhelm, as both boys are both hyper and hypo sensitive to noise - other people's noise drives them up the wall, but to manage this, they make lots of noise. Various bird calls, whistles, grunts, screeches, simultaneously pissing each other off whilst trying desperately to make the other stop. Anticipation, as both boys wait for the threats and insults to begin, and vie to get in there first. Anxiety and anger as neither likes being treated in this way, understandably.

I've been reading Ross Greene's Lost in School (which is brilliant by the way, I will be reviewing it in the near future), and trying to work on my Plan B skills with both boys, trying to encourage mutual respect and fewer fight club moments. So far I'm having no success, and I suspect I'm not alone.

I have often asked online for advice as to how to get to a point where I can manage both boys at the same time, replies are usually from parents in the same boat, I have yet to find any advice that actually works (although it's early days with Lost in School, which I will persevere with), apart from keeping them separate, which is easier said than done when I'm alone with both whilst my husband works, and both, despite having their own rooms and space, seem to want to be together all the time.

Even the Cygnet Siblings course that I attended a few weeks ago, which I had great hopes for, barely acknowledged that autistic children very often have autistic siblings, and instead focused solely on the effects of autism on neurotypical siblings, and sadly when parents were talking about the issues with their other children, advice tended to follow the line that these children were copying the behaviour of the autistic child. Whilst this is possible, the genetic risk factor shouldn't be ignored, and I strongly feel that there must be some collection of advice available for those of us who have largely neurodiverse families.

In an ideal world, what I would like is to produce a list of sibling strategies, both proactive, long term strategies, and some heat of the moment "Aaaargh, what the hell do I do now" strategies.

Thinking on my feet, being inventive and humorous are not things I'm good at, I'm a planner, I like to have methods at hand to adapt to our needs, and this is where you can help.

If you wouldn't mind, and particularly if autistic sibling difficulties affect your family too, it would be great if you could share this post and gather any helpful ideas, book recommendations etc and post them on my FB page (The PDA Soapbox). I really need some fresh ideas, and I'm pretty sure there are others who need the same.

In return, I will collate this information in one handy post, referencing these tips, linking to books and resources. In helping me out here, hopefully I can help you too!

Thank you!

Friday, 5 May 2017

Scooter school; dossing about or progressing?

It's been just over three months since PDA boy was officially deregistered from school.
In that time we've seen a big change from a tense, angry boy to one who is slowly relaxing, is now happy and willing to visit his grandparents to go for walks, to cook fish, to hunt for frogspawn in their pond, this is a far cry from the awkward boy who I had to bribe to visit them occasionally! He is also happy to drink out of mugs that aren't officially his, something which would have triggered a meltdown not that very long ago. 

So how about education? How are we getting on there?

At first glance it would appear that we are doing not very much. He is still very much settling into this new routine, he is still angry on Sunday nights in preparation for school the next day, then remembers there's no school and ends up having a mini-meltdown with the relief. 

PDA boy is very keen on scootering at the moment. YouTube videos of choice are mainly of people carrying out various impressive scooter tricks, tutorials so he can learn to do tail whips, bar spins and other tricks with odd names. Over the last few weeks, practicing these tricks has had hidden benefits for PDA boy, ones which I feel are going to play a big part in getting him ready to tackle some more academic topics one day.

We are lucky enough to have discovered a brilliant skatepark locally, a concrete haven of ramps, lumps and bumps.

Our first trip a few weeks ago was uneventful. A terrified look and "I can't" summed up the time we were there. He attempted a couple of the lower ramps, then we went home.

Within the first four weeks, he practiced these lower ramps and even started some simple jumps. It was becoming clear that for every small step of progression there needed to be some intense coaching, done in a way that avoided demands. Each small manoeuvre needed to be broken down into smaller and smaller steps, encouraging and carefully hiding praise into acceptable phrases that a praise-avoider can cope with. 

Going to the skatepark most days looks like we're both avoiding work. It's easy to load up the scooter and drive to the park, and we like an easy life, but we're seeing first hand that allowing PDA boy free access to something he enjoys is having some unexpected benefits.

After deregistering a child from school, it's very important to allow them settle into a routine, to "recover" from their years at school. PDA boy's time at school, both primary and his short secondary career, were not positive experiences for him. I can't say that school broke him, we didn't allow it to get that far, but it certainly damaged him. We are very aware that right now PDA boy needs space, a chance to relax, time to learn for himself who he is. 

Regular scootering is giving him the space, the chance and the time. 

He is pushing himself to improve and this can be tricky, sometimes these internal demands cut short our sessions as he can't bear the pressure he has put on himself, but gradually we are seeing increased willingness to follow instructions, to allow himself to be coached briefly, and we are seeing slow but steady progress. 

Anxiety can be limiting, but spending this time with him allows me to more accurately spot  the signs and consequences of this anxiety, which in turn means PDA boy can learn himself how to overcome it if he chooses to. 

Scootering and scooter ownership has led PDA boy to learn scooter maintenance. He is never parted from his trusty allen key, constantly adjusting handlebars, clamps and wheels. Keeping his scooter dialled (whatever that means!). 

Scootering has brought added unexpected benefits. Occasionally my older son joins us. 

Usually PDA boy and Brian together is a disaster, neither can tolerate the other, homelife is usually incredibly difficult, trying to meet the needs of two very similar boys who appear to set out to make life miserable for the other, and resulting in a never ending loop of doom. 
At the skate park though, we have a temporary but blissful ceasefire. Both boys will take turns on the scooter, both will coach each other without the usual insults and jibes. These are the moments that remind me that it is all worthwhile, that there are rewarding times. 

Whilst this pastime may not immediately strike anyone as academic, it is enabling PDA boy to get into the good habits of persevering and accepting instructions, and it's enabling me to work out how best to reach him when he is ready to branch out and tackle some more traditionally educational topics. 

Scooter school may sound like a cop out, but so far it's working wonders for this family. 

Thursday, 13 April 2017

Autistic/neurotypical language barrier.

It's becoming more and more clear to me that some of the main problems us autistics face is that there is a language barrier.
This harks to my previous post about unspoken rules, and is evidence (to me) of lack of understanding on both sides, it is not (as we are told so often) that those on the autistic spectrum are impaired or defective, it's not that we can't communicate, in my experience, and I wonder if it's more a problem from the (yet again) rigid expectations from some non-autistic people who cannot see that their way, their body language, their communication methods, are not and should not be the only and right way, which then clash with the differences some autistic people have when it comes to communicating resulting in mixed messages, frustration and confusion all round.

Don't get me wrong, this is not a post designed to bash non-autistic people, but when the majority of autism literature eagerly points out our failings, our impairments, our less than ideal behaviour and how to cope with it, it's only fair to point out that it goes both ways, and many of our difficulties are directly caused by neurotypical people misunderstanding us, or making ill thought out assumptions.

I've already talked about my difficulties with CAMHS, and my light bulb moment of understanding my own processing differences, and I think this is a perfect example of the misunderstandings we face all the time.

CAMHS is an organisation full of people who should be no strangers to autism and its various presentations, yet they are well known for failing many of our autistic children. They of all places, as the main option for dealing with the mental health problems our children so often struggle with, should be aiming to have a high understanding of autistic behaviour, and I'm not just talking about the stereotypical stuff, I'm talking about the differences autistic people experience when it comes to emotions, facial expressions and body language, these are all things that are commonly misinterpreted as us telling stories, exaggerating and straight out lying.
I have been in appointments with a therapist and have calmly, matter of factly even, told them about violent episodes and suicidal behaviour. In these instances I wonder if they were looking for vulnerability on my part, desperation, fear? These are all things I feel, but by the time we have spoken to anyone, out of necessity I have formulated a script in order to get out the information, without it being muddled or muddied by me searching for the right words or phrase to best describe the things we're worried about, wanting to get out as much information as I can to help them to understand us better, and if I let go enough to cry, I wouldn't be able to say a word, useful or otherwise, but in doing this, I haven't followed the acceptable NT rule book, I have come across as cold, perhaps clinical, or too calm, and the manner of getting my words across has left people, not just CAMHS, but most professionals we have worked with, believing there's something off about us and our situation.
It's frighteningly common for these misunderstandings to occur when an autistic child also has an autistic parent, and it leads to incredibly difficult situations where mothers are accused of fabricated or induced illness unfairly. We were lucky in that respect, but we are the owners of a long letter proclaiming us obstructive because of various reasons, but when you delve into those reasons with an autistic filter, it's very easy to see how this happened, and it's all down to me not quite getting the rules that NTs can easily follow. It isn't fair that we may disclose our own autism for reasons of clarity, and it is then misunderstood and used against us, particularly in situations when those we are with should have a better understanding of autism than your average person.

Talking to other autistic people, including my sons, it appears to be familiar territory when we talk about not being believed, when ill, when feeling overwhelmed, scared, hurt. PDA boy opened up to his CAMHS therapist (no mean feat considering how difficult he finds this), but as he did so with a cheerful look on his face, he wasn't believed.

When it comes to autism, facial expressions don't necessarily match the emotion we're feeling. This can be confusing, but it's not an insurmountable problem, it's easy enough for someone to take in the simple fact that What You See Isn't Always What You Get™. Just as it's easy to take on board how common it is for autistics to script out things they need to say, so it may not be delivered in a typical way. It's also easy to learn that body language may be off kilter, so whilst lack of eye contact and eyes darting around may be a sign of guilt or a shifty character in non-autistics, in autistic people this can simply mean anxiety or feeling uncomfortable. It's also important to realise that to us, a lot of NT behaviour, small talk for example, and a tendency towards ambiguity and asking open ended questions, can be really stress inducing and confusing, reducing our capacity to "act normal" in circumstances where we are then judged if we are unable to come across well.

This is a huge problem for our children in school where behaviour, even when the child is diagnosed, is judged as naughty, manipulative, deliberately obtuse, and all sorts of other delightful labels that prove that knowledge about autism is a hell of a long way off from being at an acceptable level, with all too common phrases such as "we're all a little bit autistic!" and "they have to live in the real world, they need to make an effort" completely undermining what autism means to us and our children. These attitudes succinctly point out that the world is not quite ready or able to accommodate us, and the onus is on us and our children to change into socially acceptable variations of ourselves, which then creates more confusion because then..."you don't look autistic!".

It would surely be so much easier, would it not, for anyone working with us or our children to have a basic knowledge of autism, our emotions and body communications, to save all the unfortunate and downright harmful judgements that cause damage all round.
To be absolutely honest, it would probably be possible to impart this information in just a few lines, all it takes is for people to read it without an agenda of distrust.

1. Autistic people may not display typical body language, don't make assumptions based on non-autistic standards.

2. Autistic people's facial expressions may not match their emotions, this does not mean they don't care or they're not feeling what they say they are, and it may be a coping mechanism to get through a difficult appointment.

3. Be aware that many autistic people, again as a coping mechanism, need to script what they say in order to speak fluently. Do not assume that scripting means it is exaggerated or fabricated, and again, remember those facial expressions may not match your expectations when talking about very difficult subjects.

There, I managed to say in three points the main things that would have helped us through the various appointments we had over the course of several years, and would have helped teachers to understand PDA boy a little better and led to him being supported. In terms of understanding enough to make all those appointments productive, these points could have made a huge difference to everyone involved.

An academic knowledge of autism does not make someone an expert. Combining their expertise with listening to those who live it, or live with it, on an individual basis and taking it at honest, face value, not making pointless comparisons to how non-autistic people are, is a valuable tool for anyone working with autistic people, no matter what their role, and could have the potential to improve the lives of autistic people and their families immeasurably.

Monday, 10 April 2017

The real world and unspoken rules.

"Well, they've got to live in the real world"

Words most of us have heard at some point, usually when supports are being denied, because somehow, magically, a lack of support will make our children buck up and jolly well pull themselves together.

The real world is a place where bog standard autistic people aren't appreciated. I don't mean the ones like Bill Gates, Einstein, Dan Ayckroyd, all autistics (or suspected autistics) who have, against the odds, become decent, hardworking humans (tongue firmly in cheek here, because it's not against the odds at all, these are people who've been able to carve their own niche and use their skills in a way that is denied to so many), I'm talking about the ones who are unable to find suitable employment, the ones who are more likely to attempt suicide. This is the real world and it's not one we should be proud of.

The other day I was talking to my daughter about school. Whilst we've had concerns about her anxiety, her black and white thinking which can lead her into trouble, she is not autistic, she navigates the social side of things with ease, and has taught me a lot about people through honest discussions.

She may have stated the obvious, but when she explained to me about how to get on in school, it was a real lightbulb moment as to why my two sons didn't cope, why I hated school, why so many autistic children are bullied.

There are unspoken rules at play. These are the ones which enable a child to know which teachers respond to light hearted cheekiness, which don't, which you can have banter with, get away with breaking minor school rules with if you play the game right, and which teachers you need to be on best behaviour with at all times. These same rules apply to banter with fellow pupils, recognising intent with ease, knowing if someone is being genuine or not, knowing if someone is up for a laugh or needing to be quiet.

This is a big reason why autistic people struggle. How on earth can you tell which teacher respects a more outgoing, open approach, and even if you can identify that teacher, how do you perform in a way that is at odds with your personality?

These are the things that come to some children naturally, and some less so. These are things that can mark children out as disruptive, naughty, rude, the class clown, things that can leave our children desperately confused and frustrated, because try as they might, it is incredibly difficult to fit in when these skills do not come naturally. How do you know that someone's vicious words are intended as harmless teasing? You don't. And if you attempt the same back, chances are it will be misjudged and backfire, or will be done to the wrong person, the right words to the wrong teacher.

When our children grow up they will face interviews in order to find a job. Only recently I was talking to someone who had hired someone for a job, and in the process turned down other applicants. Amongst them was someone who was more than qualified for the job, had experience, good references, but they didn't make it past the interview stage because they were shifty, they wouldn't give eye contact and obviously had something to hide. At no point did the interviewer consider that there may be a reason for this, and this seems to be typical for "the real world". Difference is not tolerated. Difference is a green light to bully, to humiliate, to judge and to dismiss in favour of people who may not be as qualified, or talented, but have a collection of social skills which people in the real world are impressed with.

Decent schools and workplaces tend to be the exception rather than the rule. It is often up to autistic people to be able to beat the odds and succeed, but when they do, this is held up against other autistics who for whatever reason haven't been able to succeed, they're seen as not trying, or choosing to behave in a way that isolates them.

The unspoken rules also cover ambiguous language. My daughter may well be able to read through vague words which on the face of it may sound like "no, you don't have to do that", and instead can interpret the silent "you don't have to, but to prove to me how dedicated you are, you will" which means a step forward to impressing and succeeding, where my oldest would not understand this at all, something that has backfired on him and led to unfair accusations of laziness and lack of stamina, and possible breakdown of a pocket money job he has held for almost two years. The real world doesn't seem terribly interested in giving opportunities to those of us who struggle with the unspoken rules.

The real world values flattery, a method of reading what someone wants to hear, being able to pick up on someone's insecurities and vanities in order to get what you want out of people. Flattery gets you everywhere apparently. As an aside, I loathe flattery, and I lose respect for people who respond to flattery, I don't believe they see the real person, they see the ability of the person to glide gracefully through a conversation, manipulating as they go along, and getting away with it because no-one wants to admit they were daft enough to fall for it!

Jobs tend to go to the people who get the rules, who can turn on the charm, who can easily converse, give eye contact and follow all those social cues that are regarded as so important, even though these things give few clues as to how skilled and loyal a worker they will be, or how much of an asset to a company they will be. Autistic people may flounder under the pressure of an interview, unexpected questions designed to throw the candidate to see what imaginative answer they can come up with, it's not an environment where we can shine.

Life isn't easy, growing up, moving through the process of education to the world of employment, with a constant barrage of expectations which can be difficult for us to meet. To non-autistic people it may be very simple to do what you need to do, and assume that it's the same for everyone else, when it isn't.

To an autistic person, school, work, socialising can all be difficult and fraught with stressors that you cannot fully prepare yourself for, even without this silent language that we're meant to understand on top of everything else.

If you still can't understand why only 16% of autistic adults are in full time employment, and you still can't see why suicide feels like a valid option, then you need to make sure that you learn and listen. But don't do it in a way that so many empathyless people do; listen then decide we're lying, being dramatic, or scroungers, or that we're weirdo freaks that don't deserve to be listened to anyway. Listen to us without an agenda.

I've now seen first hand how catastrophic a work break up can be, and it was all entirely preventable. Autism led to needless misunderstandings, and have resulted in a boy knowing beyond shadow of a doubt that he is useless. Any resilience he had has been wiped out with a few cruel words, and all because too many people feel the need to speak in riddles instead of being clear. And they say we're the ones with impairments.

Sunday, 9 April 2017

It's been over twenty five years since I wrote a book review....

....and that was in school (a horrible place), and I was unwilling to do so. Yet here I am, a grown up (sort of) and willingly writing a review of a book I bought yesterday morning.

I'd heard a lot about the book, on Twitter and Facebook, but as I'm not a great lover of fiction I'd decided to wait and not rush to buy it immediately, I'd see what others thought.

So anyway, yesterday I needed to go into town with my daughter, after a stressful traipse around Primark, we headed to Waterstones, where I decided that should the book be there, it was obviously divine intervention, was a sign, and I must buy it. The book was there, so I bought it.

In the past, i have bought some fictional books with autistic characters, but they've always felt fake, contrived, lacking in depth, following stereotypical features enough for the book to be rendered a niched cliche, not something you would happen across in the teenage section of a mainstream book shop at all, but something you would seek out on Amazon because it would be useful, rather than having expectations of actually enjoying the thing and not being able to put it down.

The State of Grace by Rachael Lucas has rendered me useless for much of this weekend, I have ignored my husband, my children, the dogs and the pigs, washing has piled up (thank god it's now school holidays and no-one needs clean uniform!) and the lounge carpet is barely visible through a layer of dog hair.

The protagonist is an autistic teenage girl, but the author has managed to produce (I assume drawing on her own experiences) a likeable, interesting character, well rounded and believable, muddling through life and accurately describing so many experiences I can relate to.

I've never read a book where the main character is someone like me. I've read books where the someone like me is the weird one, the one that others laugh at, the dispensable one, and can't tell you how refreshing it is for the tables to be turned in this way. Grace is cool in her own way, and, I believe, sheds light on how autism can be, the awkwardness, the fear, the meltdowns, but equally the fun, the love and the insight, it's a far cry from Rain Man, which I wholeheartedly thank Ms Lucas for, is that a light at the end of the "crap stuff people believe about autism" tunnel? I do hope so! Books like this may prove to be game-changers for families who are plagued by the good intentions of people who cannot see the autism in them or their children, books like this show autism in a normal every day way, the ups and the downs, the roller coaster that is real life.

I don't want to go into the book too much, because knowing me I'll end up stuck on the details and will fill you in on more than you'd appreciate. I can tell you it is definitely worth reading though. I will be passing this book on to my daughter, who had claimed it first, but made the mistake of going out with friends which gave me the chance to smuggle it out of her room (another downside of socialising...). She is looking forward to reading this, not because it's about autism and she may learn something (although this is an added benefit), but because it's a great book, which must be the best reason in the world to read a book.

Saturday, 8 April 2017

Back with a bump.

A week ago I was still flying high from my trip to Wrexham and meeting other autistic people.

As I always do when I'm in certain moods, I find it very difficult to imagine that I will ever feel different than I do in that moment. A bit like dieting, being in the zone and believing you are impervious to the siren call of chocolate and cake, yet all of a sudden, oops, you're eating chocolate with no idea how you got to that point.

Last week's euphoria is a hazy but pleasant memory. This week I am back to reality; home life, family shit going on to stress and worry about, usual constant questioning myself over everything I've said or written, or might say or write at some point, avoiding social media but not quite well enough to protect myself from my own stupidity at times like this, sky high anxiety (which is pretty bloody annoying now!) and generally feeling very isolated and low.

This is part of the reality of autism. It's not glamorous, it's not nice, but this is the stuff that needs to be dealt with on a daily basis. Having spoken to PDA boy quite openly about this, he confirms that he feels the same, but better since being out of school, although there is still a roller coaster of emotions going on.

Some strategies are useful, for PDA boy things like chopping wood and scootering can level out his mood somewhat, for me, silence really is golden, especially in an empty, tidy house and my iPad fully charged (or at least above 80% charged so I don't get twitchy about it running out of battery).

I need to remind myself of some things at times like this:

Don't talk unless you've fully thought it through.
Don't write anything unless you've fully thought it through.
In fact, scratch both of those, at times like this it's safer to say nothing and write nothing.
Just drag yourself through it, day by day.
Know that things will improve, they always do.

I have more challenges coming up in the next month which are keeping me awake at night and keeping my anxiety levels topped up, so I will be laying low for a while and trying to keep on top of the essential day to day stuff.

Autism has its down sides, but hopefully as we learn to find ways to help ourselves, these times will be fewer, or at least more manageable, and will be balanced out with easier and more contented times.

Wednesday, 5 April 2017

Top five PDA strategy countdown.

These are the top strategies that see us through daily life. 2-5 are interchangeable, depending on how the child is reacting to them, how subtly they can be slipped into life and how fresh you can keep them. Our PDA children need variety, so if a strategy works, keep swapping about with other strategies so they don't become predictable, boring and anxiety provoking.

Prescriptive ABC type of parenting strategies rarely work for PDA children. I can't tell you to follow what we do exactly, because it may not work. The trick is to use some general strategies and tweak them to your individual child, after all, you know them best, you know how much they can take without pushing back.

5. The Incredible 5 point scale.

I intend to write a more in depth blog about this, or even make a video.
The 5 point scale is an opportunity for child and parents/carers to learn to recognise the little signs that not all is well.
Until using this method, PDA boy appeared to be having giant meltdowns completely out of the blue which took us by surprise every time and really fit into the Jekyll and Hyde image that's so often associated with PDA.
Taking a big step back, watching, and making notes, allowed us to start seeing the little things, the tiny features of our son which allowed us to accurately identify how he was feeling even when he didn't have a clue himself, this then gave us a head start to introducing techniques to help him feel better and hopefully avoid meltdown.

Like any other PDA or ASD strategy, it's not infallible, it's not perfect, but it does help alongside other methods.

The 5 point scale is a way of rating how a child is feeling, 1 = fine, happy, relaxed, 2 = ok, but a little bit stressed, but nothing to,worry about at this stage, but keep closely monitoring because.... 3 = stressed, but still receptive to calming strategies and distraction to prevent reaching number..... 4 = too late, meltdown inevitable, get child to a safe place or batten down the hatches, 5 = meltdown, wait it out, there's nothing you can do here, child (or adult) is in fight, flight or freeze mode, nothing you say will help, some children may respond to hugging, some, like mine, will resort to violence if not left well alone at this stage.

I can't tell you which behaviours to look out for in your child, I don't know them, but the more you use scaling, the more in tune you will be to your own child's body language.

Printable scales can be found on the website The incredible 5 point scale, alternatively you can make them with the child making it more personalised, eg. PDA boy made his with animals, 1 was represented by a meerkat, 5 a mosquito.
You can also use more numbers, say 1-10, if 5 isn't nuanced enough.

There are other ways in which scaling can be used, for example to scale behaviour from acceptable to unacceptable, but in my opinion when it comes to PDA, it's maybe better to focus first on using it to learn how the child is feeling, we've found that using it in too many areas just dilutes its effect and makes PDA boy wary of it being used.

4. The Explosive Child by Ross Greene

An excellent book, which teaches collaboration and negotiation skills to parents/adults working with the child and the child themselves.
There is a sister website to this book called Lives in the balance, and a Facebook page (also called Lives in the balance) which shares short videos occasionally to show a practical demonstration of how these methods work.

3. Pick your battles, pick your rules.

When it comes to PDA strict boundaries and zero tolerance tend to increase the difficult behaviour, because the child has very little control their anxiety will be sky high which means that their need for control skyrockets, by avoiding demands and more fight/flight/freeze behaviour, which is very distressing and uncomfortable for the child.
Don't say no if there's any chance you'll change your mind at some point, after hours of meltdowns and badgering. If you can say yes, say yes and go with the flow. It's not always easy to say yes, and sometimes we have success with a "we can't do this right now because xyz, but after we're done we can do it, shall we write it down?".

We found as well that we need as few absolute rules as possible, obviously these will depend on the age of the child, a four year old will not need a curfew for example.
Our main rules are:
Teeth must be brushed.
Seat belts must be worn.

Other rules may be added as necessary, but there must be an obvious point to the rule, if the child can't see a reason for the rule, they are likely to not respect it, and you might as well save yourself a whole lot of heartache and meltdowns and relax the rule, save it for a time when the child is more relaxed, or there is a natural consequence to your rule.

We have not introduced a no hitting rule in our family, not for PDA boy anyway, because to do so would show him that we think this behaviour is under his control, which it isn't (yet!). PDA boy is only violent when in meltdown, something which has massively decreased since taking him out of school. He knows violence is not acceptable, and understands that we work with him to help prevent this. Once it's happening it's too late, we can only keep our other children out of the way and keep ourselves safe, no point punishing him for something he will feel dreadful about once he's calmed down, better to support him to not get to this point in the first place, and teach him the skills to regulate himself.

Rules are for things that he has control of. He does push it, he will unclip his seat belt close to home, and in these instances we will stop and lock the car, and in a very calm voice say something like "oh dear, I can't drive when people aren't strapped in", and wait. It's more difficult when he melts about this, but tackled another time by writing a list about what we're doing, that he has input in, and as he understands the seatbelt rule he will add this to a list, almost like a social story, it helps him to carry out the demand.

Toothbrushing took a long time, but we got there by making sure he had two or three toothbrushes, a choice of toothpastes, choice of toothbrushing song (yes, we sing songs to get our children to brush their teeth!), which all together eventually helped him to feel in control of the whole process.

When it comes to non-negotiable rules we've found it's important to be ultra consistent, never back down, and keep going, even if it takes months. Some things have to be done.

By taking away pointless rules it allows that child more scope to accept only a handful of rules.

"The less a child has to do, the more they are able to do" is a mantra that saw us through some very difficult times.

2. Decrease demands.

Change your language. Life is full of demands, even hidden ones, and a child will respond much better to options, "let's see if...", "I wonder how I can....", instead of "right, bedtime, NOW!" or "sit down and eat your tea".

It means you need to be imaginative in your approach, and like anything, this is a skill you can learn. Keep notes of your successes, and try to find other similar ways to handle things. Find out what works (for us laminated lists were a godsend), but shuffle things round so that the child doesn't get bored with the predictability, or you, the parent/carer don't get complacent. Talk to other parents, there are support groups out there, share strategy ideas, try new things, be humerous, adventurous even.

1. Accept PDA and be realistic.

None of the above strategies are any good long term without an underpinning of acceptance.
Your child is not naughty, or deliberately wilful. They have an autism spectrum disorder which means that even basic demands can send them into fight/flight/freeze mode. The child is likely feeling dreadful. Meltdowns are avoidable to a certain extent, using the above strategies, but when they do happen they are out of the child's control, just like an asthma attack or a seizure are not deliberate.

Understanding this, and making sure all adults involved with the care of the child go down a route of understanding and supporting instead of judging and trying to discipline it out of the child, can go a long way to a more peaceful life.

It's so common to read and hear of different parenting styles, when parents' views clash, and it's so important to remember in these cases that it's not a competition, it's not one parent pitting to win over another parent, it's about a child, a child who will be far more confused and anxious when parental approaches are conflicting.

PDA parenting can look like extreme pandering to some parents, and to strangers and sadly to many experts. When you understand the underlying anxiety though, you can get a decent understanding that the only way to progress is to take the anxiety away and take tiny steps to tackle each little trigger, or avoid it altogether. This is not weak parenting, working with your child is something amazing parents do, so don't ever let anyone doubt what you are doing for your child. The child is autistic, no amount of "well they've got to live in the real world" is going to make them stop and think "oh, I'll stop being autistic!". Accept and respect the child you've got, use methods that work, and bugger anyone else!

If one parent is resistant to trying these methods, it might be worth suggesting a trial period, say a couple of months, to use PDA strategies alone, forget discipline, forget rules for rules' sake, go with the flow, allow the child control of themselves, and see how it goes.

Be realistic though, there is no such thing as a magic wand, the child is autistic, this is not going to go away. Life is hard for the child which makes things hard for parents/carers and siblings, this is not going to go away. The point of the strategies is to make life easier and allow the child a chance to reach their potential, not to cure the child!

Keep diaries, this is simple with the 5 point scale, as you can simply record the number that corresponds to the child's feelings, you will then have a record of how things are going.

Since taking PDA boy out of school, he has gone from mainly 3s and 4s, going into 5s on a regular basis, to mainly 2s and even occasionally 1s! It's still difficult, but the improvement of mood is proof enough to us that we are doing the right thing for him.

If the child is able to articulate how they are feeling talk to them about things, ask what works for them, what doesn't work, you might be surprised at the insight they can show surrounding their demand avoidance. If they are able to tell you, you need to act on it and show them you are listening to them. Ignoring them and their views will show them they can't trust you and may negate any progress you have made.

Remember that school can be a difficult place for our children, and stress levels may consistently reflect that. If you can get school on board with at least some of these strategies it can be very beneficial to the child.
Home educating isn't as scary as we thought it would be, and seems to be something that many PDA parents choose for their child at some point, simply because the stress involved with traditional schooling can be so damaging for our children. This is a very personal choice though, and depends on many other factors in life.

Remember as well that we are all human, none of us is perfect, we all have bad days when things escalate, days when it's too easy to slip into an authoritarian parent role which inevitably leads to meltdown. Don't beat yourself up when you get it wrong, try to have a break and then start again. It's hard work, we all cock up sometimes. Remember that it's not the child's fault though, and that will make it easier to get back on track!

Monday, 3 April 2017

Services: do they know what we think of them when things go wrong?

It's late morning, I'm sitting down with my first cup of tea of the day (which is way overdue as I'm struggling to readjust from travelling free woman to being mother, home educater of two and general washer upper and doer of all) and browsing through social media whilst the boys are busying themselves with an old engine in the garden. I need a rant to help shift this horrible feeling, so here goes!

Looking on Facebook it has struck me how often I read of parents dreading involvement with their child(ren), referrals and appointments with CAMHS, with disability teams, within schools. Whilst so many of us are desperate for support, at the same time the fear of the unknown holds many of us back.

There are cases where services get it right, where children are supported well, where families feel confident that they are understood.

Sadly though, there are more stories where parents feel threatened, misunderstood and scared.

I often wonder what would happen if there was an opportunity to have a frank discussion with the same people we are scared of.

For us, this is not going to happen, we are grateful to be away from CAMHS, and I have no intention of prodding them just to find out their take on things, but at some point, for families everywhere, I think this could be a useful exercise.

Apart from asking why masking is not taken into account, I would like to know a few things:

Why, when there are already suspicions that a child is autistic, are we sent on parenting courses not designed for autistic children? We are told on a daily basis how limited resources are and cuts, cuts, cuts, so why not send us on courses (which require time out of work, or childcare, or using up precious spoons for those of us who are autistic or chronically ill) that stand a chance of being helpful?

Why, when there are suspicions of autism, is there a focus on what parents have done to cause their child's mental health difficulties?

Why is there such a push to diagnose attachment disorder when there is no evidence of early neglect?

Why is the Coventry grid still used when it is so bloody ambiguous, and as reliable as tarot cards (ie. the reader/interpreter can take anything they want out of the vague traits listed)?

Why is it assumed so often that parents are dishonest and not telling you the truth?

Why can you, the go-to place for mental health problems in children and adolescents, many of whom will be neurodiverse, not understand that a child's facial expression may well not match your expectations of neurotypical matching of emotions?

And, for that matter, why do you not understand that many parents of autistic children (diagnosed or undiagnosed) are also autistic and may tell you very matter-of-factly about home life without being upset, or appearing vulnerable. This isn't because we're telling you porky pies, in my case it's because the things I've told you have been rehearsed in my head over and over to make sure I'm fluent during appointments, to make sure I don't waste time, yours or mine. I do my crying, my vulnerability, but it's at home, my safe space. It's masking, just like my son does, except you don't believe in masking, do you?

I often wonder if the people we see are so disconnected from our day to day lives that they cannot see we are real, intelligent, caring people. It must be much easier to assume we're a bunch of no-hopers inflicting our crapness onto our poor children.

If they knew what it was like from our point of view, would things be different do you think?

Saturday, 1 April 2017

Wrexham speakers' day: Part two.

I was going to apologise for writing something else when I'm not really in any fit state to write it, but I'm not going to.
I'm tired, my brain is fuzzy, i want to go back to bed, but there's something else, something strange that I want to tell you about.

I've never had any faith in my abilities, I'm hyper aware of my bad points, the way I dress, my practical hairstyle (if you can even call it a style!), my intensity that has the power to irritate and bore at the same time, and many more to boot. I've always felt like a disappointment, and I'm sure if you ask the right (or wrong as the case may be) person, they would confirm this. To so many people, I'm just not good enough.

Before going to Wrexham I was cowed, beaten down by having to fight for everything yet inevitably fail, and had no confidence in myself. I could fake it, but it was a front, a mask, and never felt real.

As I walked through the station to the first train of the journey I was crying, silently hoping that my husband would give me permission to back down and not go (not that I need permission you understand, more that I wanted backup that my instincts to run were correct). My shoulders were hunched up around my ears. At that point I would have gladly chosen to not exist, to not go through something I had foolishly chosen to take part in.

But I changed in Wrexham. I've no idea if this change will be permanent, but it's something I will hang onto and go with the flow of this ambition I have unexpectedly found, and this new found confidence in myself.

In Wrexham, despite my eternal scruffiness, I belonged. I was with people who didn't have the societal rigid expectations of fellow human beings, no-one looked down on anyone else, we were all equals in our own individual ways.

I don't think I've ever felt an equal in proceedings, so this is a very new and exciting feeling for me.

I came away from Wrexham with my head held high, with a glimmer of an adventurous soul sparking inside me, ready to start planning the next step in my life.

At the same station that I had trudged through in tears, I returned, and this time it was my husband in tears as I strode towards him, confident and grinning.

The guard on the last leg of the journey was drawing on passengers' tickets as he checked them. The photo above is my ticket, something I will keep to remind me of my trip to Wrexham, the one that changed me. The drawing shows me, a passenger wearing earphones, and smiling.

Whoever I am, no matter how I dress, how I look, how intense and annoying I can be, how stubborn I may be, it doesn't matter. I am me, I will always be me, and I am good enough.

I've found my people, I've found my spirit, and I will not be letting that go.

Friday, 31 March 2017

NAS Speakers' day at Wrexham.

It's been a while since I last wrote anything. I've been busy preparing myself for a journey to Wrexham to join other autistic people at the National Autistic Society's public speaking day.

Preparations have included the practical; booking train tickets, working out where to go and when, where to stay, what to eat, plus the emotional parts; getting my head around doing something that involves me stepping out of my small comfort zone with no-one seeing me through the difficult stuff, taking a journey to somewhere I've never been, the prospect of meeting people who I've never met or don't know. Terrifying stuff, I know.

The last week has been spent in a state of sheer terror or manic excitement, with a dash of "wtf was I thinking!" thrown in for good measure.

The journey, thankfully, was uneventful. Don't get me wrong, it was scary, there were tears, there were huge amounts of anxiety, but I managed it, something I'm very proud of. The journey back was easier, but not without anxious, panicky and teary moments.

The day itself was better than I could imagine. I'm resisting the urge to write "It was really, really good and I can't stop grinning!" and trying to make this a little bit informative.

The whole of the morning was a talk by Sarah Hendrickx, an autistic speaker I have admired for some time. She did not disappoint, delivering information about the reality of life as a speaker, in all its glamorous detail. It's so good to hear someone talk about possible pitfalls instead of solely focusing on the unrealistic positive points only. Without knowing the difficulties and potential problems, it's impossible to prepare for them and be able to deal with them without freezing or melting. I don't know if this is an autistic feature, but I have often been accused of being negative, when I don't think I am, I'm simply being careful to plan for all eventualities.

One of the things I was worried about was if I would be, yet again, on the periphery of conversations, awkwardly listening in, not knowing how to interact and feeling drained and exhausted from all the peopling. It was a welcome surprise to find that this wasn't the case, which has been the highlight of my adventure.

Normal socialising is difficult, constantly being conscious of how you're responding, your appearance, where to look, what to do with your hands, and usually, after half an hour or so, I'm done. My eyes feel boggy, my hearing starts to distort and I am physically and mentally exhausted.
Socialising with fellow autistics was easy. Conversation was interesting and meaningful, if a break was needed a break was taken and it wasn't considered rude. I'm not exactly sure why, but I didn't experience any of the usual difficulties, and for what feels like the first time in my life, I felt like I fit in, I belonged, I felt comfortable. I feel like I've finally found my people.

I also had the chance to meet someone I've been chatting online to for a few years, and I'm very pleased to report that we got on well (which concerned me - plenty of people meet me in real life and decide that a first meeting is enough for them!), we chatted for some time, nearly three hours one evening without being peopled out, and have progressed to being friends, which I'm very happy about.

I stayed in a Premier Inn, which I can recommend, if only for the chance of some peace and quiet, early nights and the chance to catch up with The Walking Dead without constant interruptions from children, husband or dogs.

These last few days have gone some way to help me over my fear of travelling to new places. Using trains instead of relying on my driving skills was liberating, and hopefully next time (and there definitely will be a next time) my anxiety will not be quite so high.

I apologise that this post is disjointed, barely thought through and probably fairly crap. I'm exhausted, I have a banging headache, I am pretty much down to my last teaspoon, but I so wanted to write this before I crash. I don't think I can put into words how wonderful the last couple of days have been, or how free and empowered I feel right now.

It has spurred me on to consider making some videos (I'll apologise now, but as Sarah Hendrickx pointed out in her talk, if you want to speak, you need to get out there, and I'm following orders!). I don't think I can whinge and rant so much without at least trying to do something about the problems we and so many others encounter, so I am enlisting PDA boy to teach me how to make and edit videos. At this stage I'm not sure if this is something anyone should be looking forward to, and I will consider filming with a bag over my head!

Hopefully now this hurdle (albeit a fantastic one) is out of the way I can write regularly again, and more eloquently than I have done today.

Saturday, 18 March 2017

Cygnet training: puberty.

Yesterday I spent the day at a local children's centre, on a cygnet puberty course.
Cygnet is a series of training courses put together by Dr Barnados, covering various aspects of autism and aims to help us parents become experts in more specific areas of our children's lives. I'm still waiting to complete the siblings course (something we desperately need!), anger management (again, something we need) and sensory, which I'm fairly confident about, but think there will still be loads to learn.

If a child has a diagnosis of an ASD, these courses can be accessed by referral. For us this was through school, but if the diagnosis is through the NHS, I think the referral is automatic following the diagnosis, but do ask about cygnet training, it's well worth taking part.

Waiting times can be long, and if you do get a letter or email inviting you to take part, respond as quickly as you can, or you'll miss it! I learnt this a while ago as making phone calls are very anxiety inducing, and by the time I rang, all the places had been filled!

I did email to explain why my response had been late, and they were happy for me to email acceptance instead, so if this might be a difficulty for you, it is worth letting someone know that you'd rather email a response instead of making a phone call.

The content of the puberty course was very good, and the two leaders this time were excellent, and managed to make what could have been awkward and embarrassing, informative and humorous.

One of the leaders was the lady who had supported PDA boy before we deregistered him, which immediately gave me confidence and made me feel more at ease.

Topics were covered very openly, I think where autistic children are involved there's no room for vague language, and this course was no different. Potential problems were approached clearly, with no ambiguity.

A recommended book, which is one we will be buying, especially as PDA boy is no longer in school, is Making Sense of Sex: A Forthright Guide to Puberty by Sarah Attwood (yes, she's married to Tony Attwood).
The book approaches the subject of sex in a very factual, scientific way, so may appeal to many of our children and can be used as a quick reference guide when there are questions we don't know the answer to, or used by our children if they don't want to ask the questions themselves.

As I found with the main cygnet course last year, I learnt as much about myself as I did strategies for PDA boy when he hits puberty.

Several well hidden memories were unearthed which was unexpected and quite uncomfortable, but enlightening at the same time, giving me tools to fit together further mysteries of my teenage years, and gives me further reassurance that I am indeed a part of the autistic community (even though I shouldn't really need that reassurance!).

I strongly feel that late diagnosed adults should be able to access Cygnet courses (or an adult alternative) for their own benefit, to enable them to learn better who they are and make sense of what were probably confusing childhoods and teenage years.

I'm not going to give details of the course content, it's not my place to do so and I couldn't do it justice anyway, but if you have a child coming up to the golden age of puberty, I highly recommend trying to get a place on this course.

And this concludes my shortest blog post to date!

Sunday, 12 March 2017

We all know the problem, what is the solution? A lesson on cognitive dissonance.

Last week I shared an article about the difficulties autistic children can have in school on my Facebook page.

Someone commented with "We all know the problem. What is the solution."

This sums up succinctly all the difficulties that so many children and their families have.

Very often the child knows what's wrong. Often the parents know what's wrong. Sometimes an autistic person reading about a situation knows what's wrong. Between us we have lots of solutions, things that would improve life for children in school on an autistic population level and also on an individual level. Solutions which may be free, solutions that require training, solutions that require a whole transformation of the schooling system which, arguably, is not only failing children with additional needs but also those without.

Putting aside the idyllic notion of an educational overhaul, because let's face it, right now the government is hellbent on destroying it rather than improving it, let's try to focus on the alternatives, little changes that could be relatively easy to implement, but that so many are resistant to.

We need to understand why there is resistance, why are teachers and support workers so sure of their knowledge that they will dismiss people's actual experiences? It's rather like white people telling black people how they should feel about racism, thin people telling fat people how easy it is to diet, in my opinion it boils down to cognitive dissonance. Of course local authorities hanging on to their money, or spending it in dubious ways doesn't help, but there are still thousands of front line workers who seem to have no ability to empathise with the distressed children in their care.

Sometimes people hold a core belief that is very strong. When they are
presented with evidence that works against that belief, the new
evidence cannot be accepted. It would create a feeling that is
extremely uncomfortable, called cognitive dissonance. And because it
is so important to protect the core belief, they will rationalize,
ignore and even deny anything that doesn't fit in with the core belief.

Source of quote: Frantz Fanon.

I believe this explains many of the problems that occur when those with direct meaningful experience with autism clash with those who don't.
To be fair, there are those who have no direct experience, but who are more able to take on board what they're told and believe it.

Over the years we have come across this phenomenon several times. Well meaning folks trying their best to persuade us that all is well, there's nothing that a bit of discipline won't solve. Because their mindset is that autism is visible and obvious, so when autism isn't visible and obvious, they literally cannot see what is in front of them. Now this is hurtful and frustrating when this comes from family and friends, but when this comes from within school, or from doctors or CAMHS, it can be downright disastrous.

Cognitive dissonance can be seen on social media, certain parents who cannot accept that the adult autistics they are talking to online were ever anything like their child, leading to accusations of fakery and ignorance. People who cannot see that autism is anything other than a death sentence, who cannot accept that autistic people themselves are telling them otherwise.

I can see how it happens.

A bright young person leaves school and enters university, they spend years studying for their chosen degree, learning from set textbooks which tell them facts about whatever it is they're studying, be it psychology, teaching or whatever. Once they are in their chosen job, they continue to believe what they have learnt. Anyone who questions them, or doubts them, is usually not in a position qualified to challenge, to tell them that they're not understanding something.

When it comes to autism, training courses are basic and inadequate, and establish further the narrow comprehension of autism, but with the distinct disadvantage of training session attendants coming away believing they have a greater understanding, and what's more, they have a certificate which proves they know more than mere parents, who have no such document. In the "real world", when autism is involved, experience counts for nothing apparently.

This is how we see parents explaining what their child is doing, to be told there's nothing wrong, the child is fine.
Thinking about PDA specifically, because it doesn't quite fit the version of autism that is well known - repetitive motor mannerisms, no eye contact, limited interests, poor social awareness - they cannot equate our children with autism on any level, because their learning did not involve autism in an atypical, seemingly normally presenting, personal level at all.

We personally encountered this with the majority of experts we had any involvement with. They had their views, from a very neurotypical, fresh out of the manual, way. And because the textbooks rarely accept that autistics have any self-awareness or insight into their own difficulties, autistic people themselves are considered not qualified to tell it like it is and are ignored.

People have a very strong bond to what they have learnt, and to accept that maybe there is more to know, or that the textbook read in university days is now obsolete can be difficult to take on board.

I think because PDA boy has presented in such a complex way - quite serious difficulties at home, violence, very impulsive behaviour, swearing - combined with excellent masking in school - we have learnt that what you see is not always what you get. Just because behaviour in school is ok, doesn't mean that the child is fine.

Just this morning I read another excellent blog from It Must Be Mum, detailing more difficulties between a local authority and a family. In it, the author touches on why human beings have become like this, how are they comfortable writing strategies that will ultimately lead to the destruction of the child?

I strongly believe this is an example of cognitive dissonance. No large group of people is so evil as to deliberately plan to shatter a family, surely? And not just one family, but hundreds of them, if not more.

As Edmund Burke said, "All that is necessary for the triumph of evil is that good men do nothing". But what if those acting in a way that is perceived by us as evil are not aware that they are? What if they truly believe that they are working hard to improve things for our children (if only us parents would play along, tsk)?

Having spoken to many people at length about the difficulties for families in this position, I truly believe that most of the problems we have are down to ignorance. Autism is viewed with suspicion, even through hospital assessments there's an element of rooting out the "real issue" - what are the parents doing to cause this? If this attitude is so prevalent from the very base services, where there are highly trained individuals who really should have better understanding towards the very conditions that they're diagnosing (or not, as the case may be), then how is there hope for any of the other services that initially branch from this foundation of vague misunderstanding and mistrust? From there we can track interlinked services with the core belief that somehow families of non-stereotypically autistic children (of which there are many) are being dishonest, are exaggerating their child's needs, are not disciplining the child and therefore creating a problem for school, are out for gain, financial or otherwise, are ignoring prescribed advice so therefore are being obstructive.

As well as the services which could, in the same time it takes to be disparaging and ignorant, be supportive and helpful, we have an awful lot of society who hold the same views. Autism is viewed with contempt, behaviour is deliberate and a sign of poor parenting and weak characters.
It is society that is the problem. Someone not living an autistic life does not have to have the same understanding, does not have to know their child inside out, protect them from triggers, coach them through life, whilst simultaneously trying to keep themselves healthy, raising other children, possibly also with additional needs.

It is far easier to blame and wash your hands of a situation with a clear conscience, like we have seen with certain people we were close to, like we have seen with all but three people involved with PDA boy, and every single person we tried to involve with Brian, their intrinsic knowledge that their experience of gaining qualifications and experience means they are right and we, the families, are wrong and making poor excuses for our lack of parenting skills, and the behaviour of our children.

Far easier to go home in frustration after a day's work, ready to kick off your shoes and relax, thinking "well, I've done my best for that bloody family, they just don't want the help!" than to go home and have to live with the knowledge that they have badly let another child down, that their predictable actions may play a part in leading to a disabled child's almost inevitable breakdown.

These are not bad people, these are normal men and women, holding down jobs, trying to do their best like the rest of us. The mindset is that they are the ones who know what's going on, and we are the thorns in their side, the families (and they must encounter loads of them) who don't play ball, who keep fighting for their children despite the experts evidence which is often twisted to suit their set beliefs.

Like I said, most parents I have had any contact with have solutions, autistic adults who have survived the deficient system have solutions, children within the system have solutions. Why are these the very people who are being ignored?

We must reach a tipping point, a time where training becomes meaningful and useful, where lived-through experiences count for more, where our children are protected, proactive support put in place as standard (as more often happens with their physically disabled counterparts), strategies, classroom adjustments, allowances for behaviour related to the child's disability must all be key solutions for our children, but as this relies on cooperation from those who hold the power, we still have a lot of educating ahead of us. We must keep highlighting the failures, celebrating the successes, we must ourselves become qualified to change the damaging mindset from within.

I have no doubt that change will come, but whether it will be in time to protect this generation of young people, I'm not so sure.

Of course there are many families whose children are supported well, but due to the nature of the internet we do hear more negative stories, but the fact remains that too many families are let down by the services that are there to support them, the fact remains that children are removed (or threatened to be removed) simply because involved parties don't understand the issue, and are not willing to learn.

Imagine a world where it's a given that our children are valuable members of society, rather than a drain on services.
Imagine a world where it's assumed that all our children have the potential to be happy, rather than the premise that it's ok for our children to be suicidal because that's normal and acceptable for autism.
Imagine a world where information about autism comes from those who live it rather than from observing neurotypicals who, whilst they may have a decent textbook understanding, can never truly know what it is to be autistic.

We must all, as parents, as autistics, pull together to educate the systems which push so many children to collapse, and hold to account those whose actions, consciously or as a result of cognitive dissonance, have led to a situation where too many families are vulnerable.

The solution is to educate those whose core beliefs are damaging our children.

Tuesday, 7 March 2017

Quick round up of Harrogate NAS fringe conference.

Harrogate International Centre is the venue for this year's NAS Autism Professional Conference.

The Harrogate branch of the NAS organised a fringe event on site, free to parents, carers, autistic people and professionals, with two speakers and a brief chance to ask Mark Lever, Chief Executive of the NAS, questions. As the conference itself is prohibitively expensive, it's brilliant that there's an opportunity to at least have a sample of it. I do plan to save for next year's event and spend both days there though.

I thought I'd write up some of the highlights of the event, but please bear in mind I'm not brilliant at listening and writing notes at the same time, so these are the moments that struck me and stuck in my mind.

The first speaker was Adam Harris, inspirational founder of AsIAm in Ireland, an organisation that not only strives to raise awareness, but to bring about understanding and acceptance for young autistic people. It's so good to hear autistic people speak about themselves and their experiences, and even when he was explaining rather more negative issues surrounding autism, he managed to do so amusingly, accurately and positively. Many people recognised themselves and their children in his words.

Mr. Harris told us his analogy of growing up autistic, likening it to an airport travelater, whilst others are effortlessly reaching their milestones, gliding along on the travelater, those of us who are autistic are desperately trying to keep up, running alongside. Meeting milestones, but doing so later, when others have gone on to the next step. I've never heard this analogy before, but it really struck a chord, both for myself and my children, and it is one I will use in the future when trying to explain what it is like to be autistic.

After a short break Peggy Walpole (OBE) took the platform. A specialist teacher with the Service for complex autism and associated neurodevelopment disorders (SCAAND), Ms Walpole spoke passionately about her role and encouraged parents to access the service, located at the Maudsley Hospital.

What particularly struck me about her talk (and I'm cringing at myself that I didn't take anything really positive from it) was how distanced from reality some professionals are. They are undoubtedly experienced and brilliant at their jobs, but she rather assumed that any child who needs this service will be able to access it.

This flies in the face of what many families go through year in year out. In many areas CAMHS will only accept referrals for children deemed severely affected by mental health. In many areas this means that autistic, or possibly autistic children, can't even get a foot in the door. Mental health problems, when connected to the possibility of autism, whether diagnosed or not, are considered normal and not something the child needs help with.

During her talk, Ms Walpole mentioned that although the service is open to anyone in the UK, only one child had been referred from the north of the country. Rather than this being a lack of need, I would see this as a failing on the part of referring services in the North. There are many parents struggling to access adequate support for their child, and it's not for lack of trying. Referrals are refused, or are accepted and children quickly managed to discharge without anything actually being done to help them, unless blaming parents counts as help.

Every time I've seen or heard people in professional roles involved with autism talk about their job, I get the same message, that things have never been better, all these services are accessible, teachers are all working their socks off to make things better....

Unfortunately this is a difficult message for many parents to swallow, as our experiences are completely at odds with the positivity and tales of schools working hard to get things right.

At one point I almost fell off my chair as she spoke about how good Academies were in respect to pupils with special needs, that because they're not under the thumb of the local authority, they are able to bend rules and go the extra mile to ensure our children are well supported (I'll give you a minute to stop laughing).

PDA boy's school was an Academy, so I have read with sinking-hearted interest of how others' children coped in their Academies. Anecdotally, these schools tend to be very rigid with their approach to rules. Rules for rules' sake, reasonable adjustments suit the school rather than the pupil, and because they can claim not to be under the umbrella of the local authority, this seems to allow them to avoid supporting children and to actively manage children out of the school. So to hear Ms Walpole speak so positively about them in respect to special needs was something of a disappointment. Unless Academies are better in her locality, then I fear this is another case of the schools' sales patter working wonders at selling the idea of excellence and inclusivity.

On the whole the mood after her talk wasn't quite as positive and relaxed as it was following Mr Harris' talk. I think from a parents' point of view, it really showed the disconnection between services and the children/families they serve. The intention is there, the recognition for the fact that some autistic children are more complex and need a different approach, but little understanding of how very difficult it can be to access anything when you're the proud parent of a complex child.

Following this came the arrival of Mark Lever, Chief Executive of the NAS. He told us about the recent campaigns from the NAS and how they were being received, and then opened up the floor to ask the audience of their thoughts on which areas needed more attention.

I grabbed my chance and pointed out that many families are at a disadvantage due to masking, that it's difficult to get support, difficult to get anyone to take things seriously enough to refer the child for diagnosis, and difficult to get any recognition through CAMHS that, even though this child in front of them looks fine, they are actually incredibly anxious and, once home after a day at school, can barely cope. This opened up some robust discussion, this is obviously an area that negatively affects many children in school, and I sincerely hope that the NAS will consider running a campaign that highlights the less stereotypical side of autism.

One answer to this problem was more teacher training, but having attended some teacher training sessions, I'm not convinced this would be the answer. In the limited time that a training session takes, it would be impossible to impart any more than the most basic, stereotypical information about autism, and the downside which many of us have found is that a little bit of knowledge is a dangerous thing, and encourages dismissal of parents' fears because the teacher has attended a training session, therefore the teacher understandably believes that they have a good working knowledge of autism when in reality they've barely scratched the surface, when faced with a child who, to them, does not appear to be autistic, it can be impossible to persuade them otherwise.
What is desperately needed is information about autism alongside clarity that it is very individual in nature. As I've said before, parents are a largely untapped source of knowledge, instead of being dismissed and considered Mum or Dad in a sea of experts, we need to be considered key players with vital information to share.

There also followed questions and brief discussion about adult autistics with aging parents, deaf autistic children and GCSEs. Unfortunately as I was at that point reeling at my bravery of asking a question, I didn't really take in what was said on those issues, but Mark Lever did write them down and I hope all these very important issues are addressed.

The Harrogate branch of the NAS must be congratulated for arranging this event, and I hope I can attend more in the future.