Out of Control

“One ought to hold on to one’s heart; for if one lets it go, one soon loses control of the head too.”  

-Friedrich Nietzsche

I chanced upon an autism article this week with the title ‘Why Behaviour is Never Bad.’ I didn’t read it. My guess is that it is an article about the causes and purposes of behaviour in children (or adults) with autism. It will outline strategies that can be used to help understand and adjust behaviour that is unsuitable, dangerous or harmful. I expect it will touch on or mirror the principles of Applied Behavioural Analysis (ABA) and will suggest considering the ABC of behavioural situations (Antecedents, Behaviour, Consequences). I know this because I’ve read it all many, many times. It will suggest practical, logical steps towards understanding and helping your child. I know that if I read it, I will feel like a bad parent.

Sometimes the books and articles don’t help. Sometimes it is impossible to distance yourself emotionally from the intensely difficult and challenging behaviour that is presented at home. Most of the time I am able to make sure it doesn’t get to me too much. I keep control over my heart, and that helps me keep control over my head. But we’ve had an escalation of difficult behaviour recently. That short sentence doesn’t really begin to describe the relentless screaming fits, the declarations of “I hate you”, the stamping, throwing and door slamming, the refusals, the running off, the arguments or the constant belligerence. My wife is at the end of her tether and I have been returning home to tears after work. She said something to me this week that has me worried. She said, “We can barely control him. When he’s older, we will have no control over him.”

It does feel like we’re losing our grip on things at the moment. The truth is that, rather than being out of control, the problem is that my son is in control. Or rather, his behaviour is a result of his attempts, desires and need to be in control.

And as my son’s thirst for control grows, and his means of getting it become better developed, I feel myself losing control more and more. I’ve lost it with him a few times recently. Yelling at him never helps and I’m always left feeling guilty. But feeling guilty for shouting is nothing compared to the guilt I feel at my growing resentment towards the way he is sometimes. My unconditional love for my boy gets tangled up with unwanted feelings, like weeds that I can suppress but keep finding their way up through the cracks. At those times, I don’t want him to eat his breakfast while he has his hands down the front of his pants. I don’t want him to make that screeching noise all of the bloody time. I don’t want him to constantly chew his clothes, making them unusable. I don’t want to be called an idiot by my five year old son or to be told “You’re going to die!” I don’t want a screaming fit because we have run out of waffles. Be patient, say the books. Be consistent, realistic and controlled. And I am. Most of the time. But I’m also tired and sad, worried and drained. I don’t want to feel this resentment towards my son. I don’t want to wake up feeling like this.

My wife thinks that our son demonstrates many of the characteristics of PDA, or Pathological Demand Avoidance. Wikipedia describes this as “a sub type of autism characterized by an avoidance of the ordinary demands of life.” Identified in the 1980s by UK child psychologist Elizabeth Newson,  PDA has the following defining criteria:

1. Passive early history in the first year, avoiding ordinary demands and missing milestones
2. Continuing to avoid demands, panic attacks if demands are escalated
3. Surface sociability, but apparent lack of sense of social identity
4. Lability of mood and impulsive
5. Comfortable in role play and pretending
6. Language delay, seemingly the result of passivity
7. Obsessive behavior
8. Neurological signs (awkwardness, similar to autism spectrum disorders)

Some, though not all of these, apply to my son. When he’s screaming “NO!” because his mum’s asked him to move his feet while she vacuums (his mess), it’s not hard to conclude that he’s a pathologically awkward bugger (that’s not quite the terminology used by Newson). His refusal to stop what he is doing, or to comply with things that are clearly for his benefit, like getting in the car to go to a play centre, suggest that he simply cannot cope with being asked or told what to do. He has to flip out because it’s wired into his brain.

Maybe there’s something in it, but the last thing my son needs is another label, unless it brings with it lots more support or intervention, which is unlikely. Besides, I think the umbrella term of autism pretty much has his condition and needs covered. PDA is, I suspect, part and parcel of autism, but can also be distinct from autism and exclude some of the other aspects of ASD. Worth reading on this subject is the blog ‘Living with Michael’.

I typed “autism + bad behaviour” into a search engine, in an attempt to find information that might help with this week’s post. Worryingly, high amongst the top hits that I got was a site that asked, “Is autism an excuse for bad behaviour?” This time I did read the article, and was annoyed (though not surprised) to find some very ignorant and intolerant views being expressed. It is obviously very easy to blame parents for not doing anything about their (autistic) child’s behaviour or, it would appear, for unleashing their monstrous children on the general public in the first place. From the replies on the site’s thread, all too many people find it easy to ignore the fact that autism is the reason for the challenging behaviour, not a way of excusing it.

And then I realised that I’d pretty much let myself forget this recently. For all the books I’ve read, posts I’ve written and time spent learning about my boy, I managed to lose sight of the root of these problems. Perhaps it is because he is high functioning, and at this end of the spectrum there are plenty of aspects of his character that would be considered ‘normal’. Sometimes it is easy to think that his behaviour comes from some other place than his various sensory needs, his processing difficulties and his problems with adapting.

It’s also apparent to me that despite being further down the road with my son, there are still plenty of bumps and obstacles in the way. I feel like we’ve veered off course quite dramatically recently. My son is at the wheel and I need to regain control of where we are heading.

And without labouring the metaphor too much, I need to remember to go slowly. I will not let our lives become a car crash.

For anyone who recognises some of the things I have written about this week, there is some useful advice here. You can also read more about PDA here.

World Autism Awareness Day 2013

Tuesday 2nd April is World Autism Awareness Day 2013. There are all sorts of events across the UK, some of which you can find out about via the National Autistic Society website. One of my local organisations is Autism West Midlands, who have a busy schedule of events which you can read about here. We’re looking forward to taking part in some of these activities.

The day is a focal point for awareness-raising. Obviously this is something very close to our hearts. I think that before autism enters your life it is easy to ignore or let pass you by. I know I certainly did. There is also a huge amount of misconception and misinformation about autism out there. We all have a responsibility to raise awareness and educate the world about what autism really is.

I don’t know where we’d be without the various organisations who work with and support people with autism and their families. Sometimes that help has been direct, at other times indirect. Whether it is resources, forums, meetings, courses, publications or direct support, it has been a vital part of helping our family understand and support our son.

I want my son to grow up in a world that understands, accepts and celebrates the unique and beautiful person that he is. It’s not a big ask; all it takes is for there to be a little more autism awareness in the world.

Spread the word.

Rise of the Dad Bloggers

It sounds like the latest Hollywood sci-fi blockbuster, but ‘Rise of the Dad Bloggers’ is actually an article published today on Yano.co.uk, a great parenting website that is well worth a look.

I was asked to contribute to an article on blogging as a dad, and am proud to say I have been featured. Please take a look, then check out some of the other features on Yano- there is some really interesting stuff on there.

Thanks.

B’s Dad

ToM (Theory of Mind)

3.30, and my son and his nan are waiting in the school reception for his older brother. Nanny is doing the school run all this week, so special arrangements have been made for the boys to be taken to reception at the end of the day. The area is busy with parents and school office staff dealing with end-of-day business. On the wall of the reception is a large display board with photographs and names of every member of staff. My son starts to tell his nanny about the teachers, support staff, dinner ladies and caretakers, all in his usual loud volume. He points to a teacher and declares, “She’s the village idiot.” There is a mixture of shock and laughter (from both Nan and the other assembled parents). He’s not finished though. “This is the Headteacher,” he says, “he’s a drunk.”

It would not have occurred to my son that such outrageous comments were a) offensive and possibly hurtful, b) hugely embarrassing for poor nanny or c) bloody hilarious. To understand those things requires a well-developed understanding of how other people think and feel, or to put it another way, Theory of Mind. This is something my son does not have.

I wonder how many readers have ever, like me, uttered the phrase, “I’m not a mind reader” to someone (if you are married, you will be nodding)? Actually, you are a mind reader. You constantly apply theory of mind to put yourself into the other person’s shoes and deduce what they are thinking or their likely reaction. This is Theory of Mind: ‘the ability to attribute mental states to oneself and others and to understand others have beliefs, desires and intentions that are different from one’s own.’ We are able to read people because we can project onto them the understanding of how our own minds work. It is intuitive and an innate part of what makes us social creatures. The ability to ‘put oneself in anothers’ shoes’ is an ability we all have. Ironically, a lack of ToM would mean that my son would take such a statement quite literally. He would disappear from the room, only to return wearing my Dr Martens on his feet. And then fall over.

Theory of Mind (or ToM) is something I touched on in a previous post called ‘Just My Imagination’, so this post is a follow up of sorts, albeit one that is (I hope) from a slightly better informed point of view. Tony Attwood’s ‘The Complete Guide to Asperger’s Syndrome’ is an excellent resource for learning about Theory of Mind, and I have learnt a great deal from it. Still, I know I am just scraping the surface of this complex theory and its implications.

Like many autism parents, we often look back over B’s early development for signs of what was to come. Whilst reading up on ToM I came across Simon Baren-Cohen’s belief that an infant’s social skill of understanding the attention of others is a ‘critical precursor’ to the development of theory of mind. In other words, a typically developing infant will want to interact. Perhaps this explains why I often felt the lack of a bond with my son during those early years. We did not share a bond because he did not seek my attention. That’s a difficult thing to admit but at least now I can rationalise it and give reasons that go beyond the gut feeling that he didn’t like or want or need me.

Part of an infant’s understanding of, and desire for joint attention is the act of pointing. My sister in law’s infant daughter does lots of pointing. Did B do this, I asked my wife? Neither of us could recall it happening. Mind you, we both have serious black holes in our recall of those early years- chunks of memory lost to tiredness or stress or simply locked away because life was too painful at the time. Will I always feel that way about my son’s earliest years?

Lots of the research into ToM makes reference to tests such as the  ’False belief task’ or ‘Appearance-reality task’. These are tests that determine if a child can recognise that people think differently from them. For example, if a ball is in the yellow box, then is moved to the red box, will a person who didn’t see the move know where it is? The autistic child will not have the theory of mind to understand that the person will not know what they know. This ‘mind-blindness’ is at the heart of theory of mind: not understanding the mental states of others seems to be a common factor in autism. By their second year of life, infants have an implicit understanding of what other people see and what they know. Not B. For years, the words “I don’t know” were the quickest route to a meltdown for him. During his CD phase, this often meant answering the question, “What’s this song called?” by just making things up.

This also leads to B’s “My way or the highway” view of the world. Deficits in ToM mean that often B can only see things his way and is utterly rigid in his way of thinking. His poor brother often gets the brunt of this when B wants to play something that he would rather not. Sadly, all too often we make his brother play ‘just to keep the peace’. I hope he will not come to resent this. I suggested to my wife, who is a career’s adviser, that there must be many jobs in which the utter belief that only your view is valid and the ability to stick to your guns is a vital skill. “Military Dictator” was her reply.

At least making speeches will not be a problem should he pursue this career option. As my son’s verbal abilities develop, he is becoming the master of the monologue. Last week, as I was taking a shower, the bathroom door swung open and in walked B. “Hey! You know what?” he shouted as I stood there, starkers and soaking. “Mario 64 has twenty four levels and the end of level boss on level 5 is…” This was clearly the start of a very involved monologue; one that could not wait until the end of my shower. B did not have the theory of mind to consider that now might not be the time or place. So I sprayed him with water. That seemed to do the trick.

For people with autism, determining the intentions of others can be difficult, as can understanding social reciprocity or how their behaviour affects others. One report I read put it like this: ‘Without a theory of mind I may give you too much information, or too little; I may hurt your feelings, confuse you or bore you.’ I guess this can lead to difficulties maintaining friendships. At a recent parents’ evening appointment, I asked B’s teacher, as I always do, if he had friends. “He’s well liked” she answered, but her words carried an air of a rather patronising, even condescending attitude towards him (from the other kids). I’m not sure they are laughing with him, but at him. This breaks my heart.

B has enough theory of mind to be able to use deception to avoid consequences, but not enough to know when it is obvious to the other person’s mind that there is the faint whiff of BS in what he is saying. “Have you had a little toilet accident?” I will ask whilst looking into his pants. “No!” he will adamantly reply. “Are you sure?” I will ask, showing him the offending evidence. “I have not!” he will assert, in the face of overwhelming proof that he has, as that whiff gets stronger.

What he’s less good at is white lies and knowing when to curb his honesty. ToM allows us to know when its best to avoid making a comment that is likely to cause offence. Recently in our GP surgery B commented on how fat a fellow patient was. Mind you, I think he’s seeing things that are not there. The other day he told me, “Your belly is massive!” Must get a lock on that bathroom door…

Attwood identifies how ‘ToM leads to skills in the art of persuasion, compromise and management of conflict. Take those skills away and you’re left with a more primitive, confrontational, rigid approach.” I hadn’t realised that Attwood had met B. He must have- this is spot on. Though we carefully avoid getting into confrontations with B, it sometimes happens. One of the most challenging aspects of life with an autistic son is the impossibility of reasoning with him. ‘Winning’ an argument is impossible when reason does not exist. Here’s a typical example:

Me: Son, if you keep chewing that TV remote I will take it off you.

B: Then I’ll get it back

Me: No son, it will be out of reach

B: Then I’ll reach it

Me: Then you’ll be in even more trouble

B: Then you’ll die.

How do you argue with, “Then you’ll die”? That’s pretty final, isn’t it? If he’s like this at school, no wonder the Head has turned to drink. But getting angry is pointless. With autism comes a difficulty in reading the intentions, emotions and unsaid messages of others. As a teacher, I am able to use tone of voice, body language, gesture and expression to manage a class. A raised eyebrow usually does it- the students know where to draw the line. At home, my boy charges past that line. And then some.

As I learn about theory of mind I realise how many of my son’s characteristics can be attributed to some sort of ToM deficit. Eye contact, or lack of it, becomes more understandable when we consider the eyes as a way of reading what a person is thinking or feeling. If you can’t read a person’s eyes, they will not have meaning or relevance to you.

I’ve also learnt to appreciate how a ToM deficit highlights what an incredible child my son is. He does not have an innate ability to understand others and is not astute at perceiving and understanding the social cues that indicate thoughts and feelings. For my son, this is an intellectual process. He must figure it out using his intelligence, or rely on rote learning or memory. The more I think about it, the more impressive I realise that is, particularly considering how good his development has been. My grandmother recently referred to someone with autism as being ‘slow’. No Nan, if anything, the opposite is true.

My wife and B were spending some quality time together recently and she asked him, “Who do you love the most?” Clearly, having spent the afternoon together, she was expecting it to be her. “Daddy.” he replied, much to my wife’s annoyance (don’t put the question out there if you can’t handle the truth, babe). “Why Daddy?” she asked. “Because he gets me.” came the reply.

Because I get him. What a beautiful, heart-warming thing to say. My attempts to reach out, to understand and empathise, to connect with him have not been in vain. Surely the ability to ‘get’ him is the first step towards him being able to do the same? “No, you idiot,” said my wife when I suggested this, “he means when you say ‘I’m going to get you’ and chase him round the house. That sort of getting.”

Oh well. It might not have been quite the meeting of minds I thought it was, but it will do. When I ‘get’ my son we are united in our enjoyment and the fun of the moment. We are on the same wavelength and we read and respond to each other with understanding.

Maybe I was right about how we get each other after all.

Last Minute Changes

To round up the series of posts on ‘How having a child with autism has changed you as a person’, here are two final entries. Both face up to some of the difficulties I touched on in my last post. Thanks again to everyone who contributed.

Alan:

I have a son who has been diagnosed as on the spectrum, and most likely has Aspergers. I can relate to your article on B and your coming to terms with his ‘disability’ and the ignorance of others.

Anyway I would like to contribute to your next blog on how my ASD child has changed me. So here goes.

My name is Alan and I am 35 years old. My son (let’s call him R), is almost 5. I have a younger son of 3 and the first time I knew there was something wrong was when we thought our younger child was a super baby, advanced beyond what we had seen before. What of course was true was that R had not advanced as he should and was behind his peers. Even as a small baby he would push away from being cuddled, did not like baths etc etc and has never slept!

Over the last two years we as a family have faced such hard times through living and trying to cope with our sons disability that both my wife and I have had breakdowns, lost our jobs and almost our marriage and are now both on medication just to get by every day as well as now facing bankruptcy.

Through all this however I have gone through a journey of self discovery, an understanding of the way the world really is. I now also do not fear death and will embrace it when it finally arrives, I know now why they call it being at peace.

I was brought up to believe that you went out to work, provided for your family and tried to be the best person you could be. Having to give up work and being so sleep deprived that often I was a monster to have around made me feel I had failed as a person, partner and parent. But I now feel I have a true view of the world and not some suger coated spoon fed version. Life is hard, life is most often suffering. Those who cruise through it without hardship do not truly appreciate its beauty. I now cherish the small moments I took for granted. The hug from R that comes so rarely but means so much. The evening out with my wife that is about twice a year. Truly knowing who my real Friends (and family), are. I also now hate Christmas with its over indulgence on all things bright and exciting. For a family with an ASD child, Christmas is torturous.

So I guess you could say my ASD child, my beautiful R, has taught me more about life in 5 years than I knew in the previous 30. I also no longer view death in the same way I used to. I hope this is something you can use in your blog and I haven’t gone on too much. Please excuse any grammatical errors, I only get on average 4 hrs sleep a night.

Keep up the blogging,

Alan.

stefzad:

I feel in many ways I’ve dropped out of life as I once knew it. It’s hard for me to have a conversation about anything without somewhere mentioning my son. I have to bring it up at work to explain why I can and can’t travel, meet deadlines, do things most people in my professions would jump at. I bring it up socially to (hopefully) ward off listening to parents prattle on about what i now see as inane worries.

On my zen days, I realize that having a son with ASD (I’m ASDMOM- married to ASDDAD) has given me the golden ticket to avoid the temptations of superficiality. I have to exercise so much patience and compassion on a daily basis (with C and myself) that I’ve been changed irrevocably.

That said, other parents can and often do fill me with rage. I would not survive this had I not found a group of other Spectrum parents with a penchant for black humor. If I didn’t laugh with them from time to time, and rage, I wouldn’t be functioning right now.

How Autism Has Changed Me

My turn now. All week I’ve been sharing readers’ responses to the question, ‘How has having a child with autism changed you as a person?’ It was never my intention to share my own thoughts on this, although I touched upon them in the ‘Changes’ post.

But as I read through and shared all the fantastic comments this week, I found myself considering my own question more and more. I also found myself asking, ‘what could I possibly add that hasn’t already been said?’ So many of you nailed what it is to be the parent of a unique and exceptional child with autism, and the effect it has had on you. If you’ve read them I’m sure, like me, you found yourself nodding in recognition. I also found myself greatly admiring the positive outlook and hope that so many people have obviously found.

But there were one or two comments that really stood out for me, and they were not the positive ones. A blogger I admire raised an interesting question about the nature of what had been shared in these comments, asking where were the comments that shared the more difficult, less celebratory impact of autism? This struck a chord with me and made me question how representative a sample of autism parenting those responses were. Where were the parents for whom autism had dealt a devastating blow? Are we to believe that autism has a wholly positive effect, or is something being left unsaid? Is it easier to share the positive effects than the negatives?

Let me make one thing really clear: I believe that having a child with autism makes you a better person. All those contributors were, undoubtedly, right to suggest so. I’ve seen it in the people I meet, the blogs I read and the accounts that have been shared on this site. I do however, think that the more difficult, detrimental effects of autism were less well represented. I understand this- who would want to share such pain? But I do think that, if we are to be honest about autism, then it’s important to share all aspects of the truth.

So here’s my truth: I have experienced some of my lowest ebbs in the last five years. I have experienced despair and I have harboured feelings of anger. I have felt bitterness towards my child and I have resented the life I have with him. I have handled situations in ways I regret and I have, on more than one occasion, been a total knobhead to those around me. I have shown weakness when my family needed strength. I have struggled on some days from the moment my eyes opened until the moment my head hit the pillow. I have grown fearful and anxious about the future and unable to look forward. There have been periods when I felt my heart breaking every single day. I have felt the hopelessness and the guilt of a parent who does not know what they are doing.

At times like this, I have not liked myself very much.

So is this the person I have become? Is this what autism parenting has done to me?

Of course not. Whilst all of the above is true, it is by no means the complete picture. In fact, it’s just a small part of the person I have been. More importantly, these negative feelings and characteristics have become less prominent as time has passed. I think that, increasingly, I share the qualities that have been the subject of most of this week’s posts. Autism has brought me patience, strength, tolerance, focus, determination, gratitude and a whole host of other qualities that modesty prevents me from dwelling on. And of course it has brought the most amazing child into my life. Like all those other contributors, I am a better person and I am lucky.

But people are complicated and emotions are complicated. I still have bad days.

I started writing this blog because I could not find books by people who were struggling with autism. If my blog had a purpose, it was to show that not everyone automatically knows how to cope with or embrace the differences in their child. If I was new to autism and reading these recent posts, I might not recognise some of the experiences described. I might even question how and why I wasn’t in such a positive place. Why wasn’t I a better person?

So this post is for anyone who is at the start of the ride. For those who don’t feel like a better person. I have not forgotten, nor will I ever forget, what it is like. I still struggle with my son’s autism and there are still days when I am most certainly not a better person. But those days are far fewer than they were.

As a teacher, I meet hundreds of parents. Some are brilliant parents and some less so. But I have never met the parent of an autistic child who I did not think was amazing. These parents have been given the gift of brilliance by their children. I am sure you will get there too.

How Has Autism Parenting Changed You (Part Seven)?

All this week I’ve been sharing the responses I received to the question, ‘How has having a child with autism changed you as a person?’ The response I got was excellent, and having summarised some of those replies in the post ‘Changes’, I decided to share them in full in this series of blog posts. I will shortly transfer them all to the blog page also called ‘Changes’. To round them up, here are the replies that reached me via Facebook. 

Thanks to everyone who helped make this worthwhile. I really appreciate your contributions. Apologies if I’ve missed anyone out- it wasn’t intentional!

Clairee Elizabeth It has made me think more about society and societal views. It has made me more aware. It has made me eat more and gain weight! It has made me sad but determined and it has shown me true love

Cyndi Marcus Richards Having a child with autism has opened both my mind and heart. I’m more patient and understanding and less judgemental now x

Anita Higgs It has taught me patience & compassion I didnt know it was possible to have. It has taught me unconditional love and to be less judgemental. I have met some amazing people who have worked with my son and have realised the importance of having friends who accept me & my family for who & what we are. And of course having a group like this is invaluable. There us so much support & you never feel judged or “the odd one out”. I have never met anyone on this group in the flesh yet despite this I feel their pain & feel that I know some of them.

Arlene Graham It has made myself and my family look outside the box, we try not to see what he ‘can’t do’ and encourage what he ‘can do’. Always looking for new ways and strategies to help him cope with what seems an everyday situation to most. It has taught us all not to be so judgemental if a child is having what most consider a ‘tantrum’ in the shop or street and think beyond what we see with our eyes. I’ve also learned that although he can sound vicious and hurtful on his down days, not to take his words to heart because he does love me in his own way although he can’t express it in the way others can. Most of all I’ve learned that he and all kids alike are worth every moment we spend on them as how we treat them as a person and an equal is lifechanging for them. <3 <3<3 my boys.

Dawn Catherine Dwyer To be honest it has devastated our family. My son was dx at 10 yrs. Aspergers/OCD/Mixed Anxiety. Just before dx my husband and his father (who also shows a fair sprinkling of AS) divorced. And my daughter moved out, she being my older child from a previous relationship. My son has specific phobias that are very isolating for him and me as his sole carer. Im 46, have no social life, my son is very forgetful and cannot be left for more than an hour if he is awake or likely to wake up soon. We never go anywhere or go on holiday. l am trapped in the nightmare of the benefits system as i cannot work and need to be with him most if not all the time. He gets out of the house about once a week, consequently he has a weight problem and at 17 is very unfit. His only conversing with the outside world is his XBox `special Interest` veering on obsession. The future is bleak. I try to get `on with` my own life but it is difficult when you have little money, no job, no friends a small family and an ex (his dad) who pops in for litterally 2 minutes a week.

I find that the actual Aspergers `bit` of his dx is OK to live with for both of us, its his phobias that kill our social life that could help him with lots of other interactions. I have even asked if hypnosis is available on the NHS. Just to try and live without his one particular phobia for a while, and see if he could then appreciate life without feeling anxious-enough for this to change his thinking. I try to daydream myself into his world and his emotions and his thinking and i try to reason it all out. I fail as i expect i will every time. Unfortunately he lacks the empathy to do the same from my NT perspective.

Tracey Harrison It has made me realise how complex the whole spectrum is. Not just in the sense of ASD but with all the co-morbid conditions that make the condition even more complex. My son has Turette Syndrom and OCD. When his ASD is not managed properly his OCD kicks in big time to help him find some control in his world. But as he is autistic he has no ‘brakes’ on his OCD behaviour, so insread of finding comfort in hand washing/checking rituals he listens to the compulsions to set fires, mess with electrictiy etc.

Hayley Thomas In my brutally honest way it has changed me as a person not that iv ever been what u class shy !! But I am now outspoken knowledgable and will question professionals. I trust no1 and live 4 my family. I find support lacking in all areas education and health I find ppl judge me daily and I hate most ‘muggle’ families !!!it has also showed me whole new world and me and my lil family could b no closer spesh as 6 year old can’t stand ppl we r kinda prisoners here ! I have met other amazin life long parents thro groups like this. I can ‘spot’ asd with my radar and now understand a lot more than I did b4 this journey when I was an ignorant muggle mum. X

Tracey Harrison Like the ‘muggle’ term! Cos unless you’ve lived with it, you’ve no idea. The other thing I’ve noticed is with siblings. Both my son’s siblings are described by all their teachers as kind and tolerant, treating everyone the same and not saying unkind things. I’m sure this is because of their expeience with their brother. x

Tracey Harrison My youngest definitely has traits, and he’s going to find life difficult..but I think he will be one of those classed as a ‘geek’ which is becoming a bit more acceptable now! He’ll find his niche but until then we’ll cope with the tics and the obsession with numbers and the saying whatever is on his mind and the lack of imaginative play…!!!

Mary Sutton I was diagnosed a year after my son. THAT explained a lot! What it didn’t prepare me for was how SOME people would automatically judge you for being autistic, but then fail to offer you any support.