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.