Hey Aspie Daddy fans,
I recently did an interview for a site called Learn From Autistics about living with a late diagnosis of autism. It is the first of a two-part series.
Click here to see it and thanks for reading!
Hey Aspie Daddy fans,
I recently did an interview for a site called Learn From Autistics about living with a late diagnosis of autism. It is the first of a two-part series.
Click here to see it and thanks for reading!
My little (neurotypical) daughter is now three, and by January we have to select her schools. I had thought that this would be easy – have a look at them, decide which is best, and apply – but what I hadn’t counted on was how much my own experiences of school would colour my thinking, or how this process would stir up all the unpleasant emotional and psychological shit that has lain buried inside me for twenty years.
There are two schools in particular that we’re looking at, one small and with more of a personal focus, the other big and more academic. Both of them fill me with dread.
At the big, academic school there’ll be plenty of kids for my daughter to make friends with, but the environment is less supportive. In the small school, she’ll be better looked after, but if the other kids turn on her and she’s the one who’s the outsider then there’ll be nowhere to hide.
In all honesty, I don’t care about the academic standing of either – I care about my daughter’s happiness and emotional wellbeing, and the damage that can be caused by making the wrong decision.
As you’ve probably inferred by now, I hated school. I found the other children silly and immature. I couldn’t relate to them or their games. I preferred hanging around with the teachers and the dinner ladies. Sometimes I took teddy bears to school and played with them instead because they were easier to understand. That’s when I wasn’t collecting insects or classifying all the trees, or crying all the time at the slightest provocation.
When I was seven we moved house and I changed schools. I decided that I didn’t want to be known as a crybaby, so every time I got upset I forced the feelings inwards. I hated sitting with the other kids in lessons, preferring a seat by myself while all the rest were chatting and playing. At breaktimes I’d join in with the games, but mostly I’d keep up a stream of narration, pretending I was a commentator observing the people around me. Always separate, even when I was part of the whole.
I always preferred my own company. If it was a wet break I could stay in and draw a picture or read a book – infinitely better than mixing with others. People made fun of me for my interests and good behaviour and excellence at schoolwork, laughed at my complete lack of sporting prowess. I had spiky hair, goofy tooth, and massive plastic glasses. Whenever somebody called me names or wouldn’t let me play with them or tried to force me into being naughty, I inwardly wept.
Being told off by the teachers – normally for things that other people had done and blamed on me – was an indignity I dwelt on for days. That was when I wasn’t correcting their spelling, pointing out mistakes in the maths textbooks, or telling them every intimate detail of my life.
Every morning I’d tell my mum I had a funny feeling in my tummy, and every morning she’d say, ‘Just go and see how you feel. If it gets worse they can always ring me to come and pick you up.’ But of course, they never did.
I always knew that I was different. I was constantly moody, constantly confused and just wanted to be left alone. But none of that really bothered me until I was ten, when I started to want friends but realised I was unable to have them.
My brother always seemed to have it easier. He just drifted through school without any struggles. He could make friends with anybody, and normally did. He was always out on his bike, off to the cinema, heading to parties. Sometimes my parents made him take me along, something he hated only slightly more than I did – I had my pride.
I often asked when I would have friends like my brother did. ‘When you get to secondary school,’ my mum used to say. ‘You’ll make plenty of friends there.’
My father was less optimistic. He constantly stressed how I needed to learn how to get on with people or else I wouldn’t cope with life. I think they were terrified that I was different and desperate for me to be normal. They started sending me to Christian boys’ camps in the summer, hoping I would build my character and somehow learn to socialise. They were abject lessons in just how incapable I was of functioning in a group of my peers. I came home from them bruised and scarred and even more aware of my utter ineptitude.
It was when I started secondary school at age 12, an institution of 1500 kids that taught you your only value was in your grades, that everything went to hell. Lessons were bad but survivable – people would steal my pencil case, snap my rulers, stab me with compass needles and squirt ink on my shirt, but there was never a shortage of people wanting to sit by me so they could copy. It was the breaktimes that broke me down.
I hung around with people I’d been to middle school with – people who hadn’t actually liked me for the past few years and now, to impress their new friends, showed off their disdain at every opportunity. I was the guy to push, the guy to throw things at, the guy to trip up in the mud; I was the guy to call names, to run away and hide from, to spread rumours about and laugh at. I wasn’t handsome or cool or popular – I was what they called a ‘gorm’, short for ‘gormless’ – a nerdy, geeky swot, teacher’s pet, loser. Sometimes they’d take turns spitting on me – thick, snotty loogies on my bag, on my back, even in my face.
If ever I stood up for myself, which was rare, I’d make threats I had no possibility of following through with. They’d simply threaten to beat the crap out of me, so I did nothing, and let my pride, my dignity and my self-esteem sink into the earth beneath my feet, where I wished I could curl up and die. Looking back, I’d have preferred them to beat me – those wounds heal. The wounds they gave me can last a lifetime.
Those twenty minutes a day killed me.
Luckily, we lived opposite the back gate of the school so I was able to go home for lunch. That was my lifeline. Without it, I don’t know how I’d have survived. I sat by myself, ate some lunch, recharged my batteries to face the afternoon. And, most importantly, I didn’t have to mix with anybody else.
I put up with this crap for a year. One whole year. Until, one week before the school year ended, I started hanging around with a boy that I will call Judas.
I don’t know how it came about that we hung out together. We sat next to one another in most of our classes, and I thought he was pretty darned awesome. He was intelligent, like me, but he was also sporty, which made him well-liked. For whatever reason, we hung out together at morning break, and then the next day. The following day, I even stayed at school for lunch, and the next, before we broke up for the summer holidays. For four days I had a friend.
My God, I was happy. If this was what it meant to have a friend, then I now knew everything I’d been missing out on, and everything that everyone else seemed to have. In the rain-drenched misery among the bullies at boys’ camp, I looked forward to the new term, not with horror and apprehension, but with a sense of anticipation, because now I had a friend!
The first day back at school, Monday morning, second period – art. I sat next to Judas like the cat that got the cream. I was so excited to catch up, so excited for the future. It felt so good to be normal.
When the bell went for morning break, I almost burst with excitement. He turned to me and said, ‘See you after break,’ and walked out of the room.
I thought it was a joke. I followed him at a distance, and when he stepped outside I jumped out at him.
‘Ha ha, surprised you!’
He glared at me. ‘I said I’d see you after break.’
‘Yeah, funny,’ I said, still thinking it was some kind of joke I just didn’t understand.
He stopped walking. ‘No, I’m serious, Gillan,’ he said. ‘Just piss off. I’ve got some new friends now.’
And he walked on.
I followed him again, unsure just what was happening. He walked up to a group of lads – football lads. He’d made new friends over the holidays and they didn’t include me.
I don’t think I have ever felt so alone.
Near where they stood were my old ‘friends’. I wouldn’t go back to them, no way. I was desperate, but not that desperate.
I saw a kid I’d known at middle school – Lucifer, we’ll call him – with a group of kids I didn’t know, and decided I’d try to hang with him, just for today, just so I wouldn’t have to be alone. In truth, he was a bully and had been the scourge of the middle school, but he’d always gone easy on me, possibly because there was no fun in beating on the developmentally disabled kid, albeit undiagnosed, and possibly because the one time he’d tried to put me in a headlock, I’d panicked and in a flurry of punches knocked him on his ass.
Anyway, Lucifer and his friends were all eating slices of pizza from the cafeteria. I was caught in the midst of despair, and not having a clue about how to approach people, I simply walked straight up to him and said, ‘Lucifer, can I have some of your pizza?’
He reacted as though I’d asked to sleep with his sister. I’ve never seen a face show such disdain. With an evil, mocking sneer, he hissed, ‘You fucking skank,’ and with a wall of expletives he ripped a chunk off his pizza and threw it in my face. His friends laughed, and some smiling, some sneering, ripped pieces off their pizzas and threw them at me too, shouting and swearing and laughing.
Everybody turned to look – my old friends, Judas and his new friends – everyone.
I did what I’d sworn not to – I cried. But I hid it well. Holding my head up high, I turned and strolled away from the mockery, bits of tomato sauce on my cheeks, pretending I wasn’t humiliated and utterly heartbroken. I headed for the nearest toilets and cried my eyes out. (Years after this, whenever this group saw me they’d throw things at me and call me a skank. Once when I was 17 they came upon me in the street, shoulder-barged me into the road and threw cigarette lighters at me).
After break, I went back to art and Judas sat down next to me as though nothing had happened. ‘Why can’t I hang around with you at break?’ I asked.
‘You wouldn’t fit in,’ he said. ‘They wouldn’t like you.’
And that was that.
The rest of the week, I hid in the toilets, hid in the bushes – I didn’t want people to see that I was entirely on my own. One day I even tried to join the group regardless of Judas’s warnings. They couldn’t physically push me out, could they? It turned out that they could. After being frogmarched across the playground, I decided not to repeat that indignity.
It was with a heavy heart, leaden legs, that the following week I walked up to my old ‘friends’ at breaktime. ‘Oh, you’re back,’ they said. And things resumed as though I’d never been away. Because being bullied was better than hiding in the toilets.
About ten months later, the school decided to build a new block and new playground. Because of all the builders on site, it was thought prudent, for health and safety reasons, to shrink lunchtime from one hour to just 25-minutes. As a result, they revoked all the lunch passes. My 20-minutes of hell each day was going to be 45.
Unable to cope with being bullied 3 hours and 45 minutes each week, I spied on the other friendship groups, found one I thought I might be able to join – a mixed group, some of whom were in my classes – and after a week trying to build up the courage, I approached one of the members and asked if I could hang out with him and his friends at breaktime.
‘Sure, whatever, I don’t care,’ he said, and I was in.
Things didn’t go exactly to plan. I was so desperate to fit in, so terrified of being rejected, that I lost the ability to speak. It was weeks before I managed to say a single word. I stood at a slight remove from them, waiting my chance. Every time I opened my mouth to speak, this little voice in my head screamed, ‘DON’T SAY THAT THEY’LL THINK YOU’RE WEIRD!’ and I clamped my lips together. Sometimes I managed to think up something decent, but by the time I worked up the courage to voice it, the conversation had moved on and it was already too late. So I stood, in silence, like the number one buzzkill, so afraid they wouldn’t like me that I guaranteed they wouldn’t – the dictionary definition of a self-fulfilling prophecy.
Within the first week I realised it wasn’t going to work. While not as bad as my old ‘friends’, my new ‘friends’ didn’t exactly make me feel welcome. One told me to my face, repeatedly, that she hated me because I was so weird and she wanted me to go away. One used to stuff her rubbish in my shirt pocket as though I was a dustbin. They loved telling me I wasn’t actually part of ‘their group’. I was the butt of every joke. I smiled, as though I was in on it, when in fact I knew they were mercilessly mocking me.
I knew from the start that it wasn’t going to work. I hung around with them for a year and a half. Breaktime and lunch. Forty-five minutes a day. Because I had no one else.
You don’t have to be a psychiatrist to know what that kind of thing does to a person. My self-esteem, self-identity, my confidence – my very value as a human being – they all went away. It got to the point where I was too afraid to put up my hand in class, even though I knew the answer, because people would look at me and I couldn’t bear their judgement. Looking back, I’m surprised I didn’t become a statistic, if you catch my meaning.
And throughout this time, Judas still sat next to me in every class we had together, and listened sympathetically as I told him of my loneliness, and made all the right sounds and facial expressions when I told him I was being bullied, and watched as I shrank into a shell of my former self, and he did nothing. Except, that is, on the days when I couldn’t face them and so wandered about alone – he’d always be sure to tell me he’d seen me wandering around on my own, and that if he’d noticed I was being a loner then other people would too, and perhaps I’d better go back and hang out with the bullies again. Because, evidently, it’s better to be bullied than have no ‘friends’.
I asked him repeatedly if I could hang out with him at breaktime. I begged – I told him I wouldn’t even have to say anything, I’d just stand there so I didn’t have to be alone. His answer was always the same. ‘You wouldn’t fit in.’ For a year and a half.
What hurt the most was that he was my best friend in the classroom. He was my lab partner, my vocab buddy. Every project we’d do together, every history assignment, every book report. Art, music, craft, IT. But other than those four days in our first year, outside of the classroom he wanted nothing to do with me.
I loved that guy for three-and-a-half years, right up to the moment I realised that I hated him far more than any of the bullies, and stopped sitting next to him in class. He never spoke to me again, even though we went to the same VI Form. I was amazed by how quickly and easily I was replaced, though it should have come as no surprise. I clearly meant nothing to him.
About the same time, I decided I couldn’t go on anymore as I had. I spent the last six months of my time at that school hanging out with the band geeks who congregated on the benches at breaktime with their inhalers and head braces and vocal jazz stylings. I didn’t particularly like them, but it was all about survival by this point, and they weren’t really in a position to bully anyone. Luckily, by this time, the block was built and I could go home for lunch again, because all of them had orchestra, and music lessons and choir practice at lunch.
And so I survived, in body if not in mind. I left school, and I buried these experiences and haven’t spoken to anybody about them for twenty years now. I wonder if all the tattoos and piercings I got in my late teens, and all the challenges I undertook in my early twenties – rock climbing, bungee jumping, parachute jumping, scuba diving, tall ship sailing, backpacking – were a way of trying to work through all that anguish and self-hatred. To punish myself and see if I really mattered.
I thought I’d got over. Thought it was left in the past. Until I’ve had to start looking at schools for my little girl. And I realise I’m not over it at all.
I can think of my best friend telling a thirteen-year-old me to piss off because he’s found new friends, and it still hurts. I can think of reaching out to another for help in my lowest moment, only to have him literally throw it back in my face, and I still cringe at the way he looked at me. And worse, I can think of repeatedly begging a friend to save me from my bullies only to have him refuse because I ‘wouldn’t fit in’, but instead of the despair I felt at the time, now I feel only anger.
I never dealt with any of these feelings. I live my life looking forward, not back. What’s in the past no longer has the power to hurt you – or so I thought.
So perhaps you’ll understand why I don’t care about the league tables my mother-in-law sends me, and why I don’t care about the Ofsted reports, and why I don’t care if every one of the school’s pupils fails their SATs. The only thing I care about is if my daughter will be happy at school. Because if she’s not, all the league tables and Ofsted reports in the world couldn’t make me send her there.
Welcome to Aspie Daddy, the website of Gillan Drew, author of An Adult With An Autism Diagnosis: A Guide for the Newly Diagnosed. Here I blog about autism and parenting and whatever else takes my fancy.
I was diagnosed with Asperger’s Syndrome at 28, and now nearing forty, I live with my autistic wife and two infant daughters on the border of Dorset and Hampshire.
If you get the chance, check out my fiction website The Struggling Writer where you can read some short stories and novel extracts and some of my rants about writing.
Thanks for dropping by.
A while ago I posted An open letter to the Mental Health Community arguing that when confronted by a person with both autism and mental health difficulties, they found it all too easy to fob us off to the Learning Disabilities Team without properly investigating our problems. The specific cause of that letter was their refusal to see my wife, despite her deteriorating mental health, because of her autism. Hardly a stellar job of ‘care in the community’.
While not deigning to see her, they did, in absentia, recommend the GP put her on a second antidepressant in addition to the one she was already on, which caused her mood swings to become even more wild, and resulted in massive disruption to our home life without any follow-up. So my wife stopped taking all her antidepressants, and things got even worse. Again, a signal failure of the Mental Health Community to provide much-needed help and support to a person (and family) in distress. (Learning Disabilities, by the way, refused to see her because, apparently, her IQ is too high. So where exactly do people with autism go to get specialist help?)
I will be honest with you – thanks to my wife’s unstable, abusive, and downright crazy behaviour, her unwillingness to address her issues, and our increasingly fractious relationship, I have seriously considered walking out and taking the kids with me. It has been a year of absolute hell, and there is not one person I’ve spoken to who thinks I should stay, and fifteen or so who have told me I should go.
My response has always been the same: I want to make sure I’ve tried everything to make it work before I go so that if one day my kids ask me if there was anything more I could have done, I can honestly say no. People tell me I have passed that point, but I do not need to justify it to them, only myself and my children. But it has been far from easy.
Unwilling to give up and convinced there was more going on with my wife than simply autism, I read everything I could about developmental disorders, learning disabilities and mental health issues, until I eventually came across something called Emotionally Unstable Personality Disorder of the Impulsive Type. Of the five criteria in ICD-10, my wife fit all of them, and you need three for a diagnosis. Of the nine criteria on the NHS website (five required for a diagnosis), she fit eight.
Her impulsive behaviours without any thought of the consequences, her self-destructive tendencies, her mood swings and emotional overreactions, her uncontrollable behavioural explosions, her lack of opinions and minimal sense of self, her terrible fear of abandonment, her need for continual reassurance, her turbulent interpersonal relationships, her refusal to follow through with anything that doesn’t give instant gratification, her ‘zoning out’ whenever anything ‘difficult’ is discussed, her hypersensitivity to perceived criticism, her paranoia at times of stress and break from reality when she is highly emotional, her profligate spending, her binge eating, the fact she swings from obsessing over me to hating me, and that she can never be relaxed or comfortable – it all fits EUPD.
And it’s hardly a new thing – her school reports aged five, six, seven say the exact same things: gives up on anything that’s hard; does not apply herself; struggles to control her behaviour; will not take instruction or correction; retreats into her own world and is unreachable; does not mix well with the other children; terrified of failing; requires constant reassurance; moody; angry; difficult.
Armed with this knowledge, I wrote a document outlining all the symptoms and diagnostic criteria of EUPD, and all of my wife’s behaviours that fit these conditions, and examples of each. We then went back to the doctor, who again referred my wife to the Community Mental Health Team, and attached this document. Lo and behold, they agreed to see my wife this time.
She saw them today with her Care Manager. Yes, they said, she almost certainly has Emotionally Unstable (Impulsive) Personality Disorder. They are referring her to a specialist to diagnose her and giving her twelve weeks of CBT. It is a lifelong condition and they will work with her. Thank goodness.
I suppose I should be relieved, and thankful. But here is my issue: I am not a doctor. I am most certainly not a psychiatrist. I am in no way a mental healthcare professional. So why the hell was it down to me to investigate, research and suggest a potential diagnosis? Why on earth did I have to fight and struggle and browbeat and beg and eventually find the answers for myself before anyone would see us? And why, if it’s so plain she has a personality disorder, has it taken until she is 32 years of age for someone to spot it? Not to mention that if they had seen her seven months ago, it would have saved my family a shitload of soul-searching, heartache and pain. Seems to me there’s not that much ‘care’ in healthcare.
But at least this shows the value of persistence. If at first you don’t succeed…do their job for them.
Dear doctors, psychiatrists, psychologists and other Mental Health professionals,
As somebody who accessed Mental Health services for much of his teens and twenties – and, depending on the person that I saw, was variously diagnosed with clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder and emotionally unstable (borderline) personality disorder, and prescribed all manner of antidepressants and mood stabilsers – may I begin by saying that I have nothing but respect for your profession. It is a very problematic and stressful area of medicine in which to specialise, and much of your work is more an art than a science. I am therefore fully cognizant of the pressures under which you work, and the difficulties that you face on a daily basis.
It is therefore with the best of intentions and sincere regret that I feel I must bring to your attention an area in which you could be regarded as failing in your duty of care. This is in the provision of services to adults with autism, particularly high-functioning members of the community, to whom your behaviour often amounts to nothing less than a flying kick to the balls – with both feet. Allow me to elucidate.
When I was working through my various (mis)diagnoses and battling the side-effects of my numerous sedating, mind-numbing and libido-crushing medications, I very helpfully had monthly reviews from a psychiatrist and weekly sessions from a counselling psychologist, such were my mental health difficulties. Indeed, they provided a measure of stability in an otherwise chaotic and trouble-filled life.
It was a little disheartening, then, when upon being diagnosed with Asperger’s Syndrome at the age of 28, I was immediately discharged by the Community Mental Health Team because ‘autism isn’t a mental illness’, and handed over to the Learning Disabilities Team, who said that ‘we have no services for high-functioning individuals’ and immediately discharged me also. This was ten years ago, and in all that time I have had no further input from the Mental Health Team or Learning Disabilities Team.
This makes me wonder, therefore, if you think that my clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder, and emotionally unstable (borderline) personality disorder were merely symptoms of autism, rather than separate but co-existing mental health conditions, or if you thought that all of my problems with mood, identity, anxiety and depression would simply vanish alongside the diagnosis of autism? Surely, you did, else it would have been unethical to discharge somebody who had been receiving mental health treatment for over a decade without ensuring they were fully ‘cured’ and no longer needed mental health input.
To make it absolutely clear, I am wondering whether you think that having autism precludes the possibility of a person having mental health difficulties too? Because that seems, to a layman, a little like washing your hands of people who need help simply because you can pass the buck and attribute all their problems to autism.
Allow me a further, more recent example. My wife also has a diagnosis of autism and we have two children. Of late, her mental health has deteriorated quite badly, which has had a deleterious effect on our marriage and my ability to support both her and our children. In brief, her moods swing like a yo-yo, from hateful and aggressive and irrational to childish and giggly and equally irrational, and back again in the space of ten minutes; her OCDs mean she spends five hours an evening searching for things she has lost; she misremembers what has been said, or makes things up and believes them; struggles to differentiate fantasy from reality; at times seems out of control; is paranoid about people conspiring against her, then contacts others to conspire against me; continually empties her bank account buying pink plastic toys for our girls (eight dolls houses, seven push chairs, fifteen pairs of shoes); sabotages everything good that she has going for her; asks me to move out and take the children and then tells me she can’t live without me; is suffering the worst confidence, self-esteem and anxiety crises of her life; shuts down and retreats into her own world if she cannot handle things; and is worrying all her autism-specialist support workers, who have seen her behaviour first-hand and believe it to stem from some mental health disorder underlying the autism.
Now, to get my wife to acknowledge she has a problem has been tantamount to climbing Everest, but with much help and support from Children’s Services, who are equally concerned about her, and the Health Visitor, who similarly agrees, we managed to get her to attend to an appointment with her GP. She was accompanied by her Autism Support Manager, an expert who has known her for ten years and says that her behaviour is not normal and not consistent with autism. Her GP agreed that her behaviour was very troubling and, given the impact it is having on our marriage and her ability to look after the children, made an urgent referral to the Mental Health Team to have my wife assessed.
I have been castigated by my wife’s family for seeking help, for talking to people outside the family, for being honest. They told me I have betrayed my marriage, I am going to have my children taken away, everything is my fault and I should never speak to anybody about anything, but I have done this through a genuine desire to save my marriage, to get my wife help and make things better for her by giving her access to the wonderful abilities of Mental Health professionals such as yourselves. I was sure that you would be able to help.
You can therefore imagine my horror and disgust to receive a letter from the Mental Health Team saying that, after receiving the referral, they had ‘discussed’ my wife’s case and decided she doesn’t have any mental health problems and therefore doesn’t need to be assessed and has been discharged. Clearly, then, you think that OCD is simply a side-effect of autism; rapid mood swings are a side-effect of autism; irrationality and self-destructive behaviour are side-effects of autism; paranoia is a side-effect of autism; depression, anxiety, low self-esteem and low confidence are side-effects of autism; and everybody who knows her and suggests she is suffering mental health problems is simply wrong, because she has autism and that trumps all. Indeed, I imagine that if she was hearing voices, or believed she was the Queen of Sheba, you would attribute that to her autism also. I would therefore like to ask: exactly what does it take for Mental Health professionals to see somebody with autism?
In society, those of us on the autism spectrum suffer a great deal of prejudice from people who see us as a label, a walking, talking diagnosis ripped from the pages of the DSM, instead of unique individuals. It is appalling that we must experience this same stigma from the Mental Health Community, who really ought to know better. Just because we have autism doesn’t mean we don’t also have mental health difficulties, and certainly should not give you the right to decline to see us simply because we have a developmental disorder to which you can ascribe all our problems.
I know that money is tight in this age of austerity and it helps your budget to fob off people with autism to other, less appropriate departments, but you might like to ask yourselves whether discriminating against an entire section of society – many of whom are struggling with various mental health disorders and very real distress and anguish – is right, or helpful, or fair.
In summary, I have sought your help because my wife’s mental health has been deteriorating, but you have refused to see her because you have decided all her problems are concomitant with a diagnosis of autism, placing the onus on me to hold this family together without your specialist assistance. I can only hope that her mental health does not continue to decline to the point at which even you can’t ignore it.
Warm regards and best wishes,
[UPDATE: The value of persistence]
For anybody in the Dorset/Hampshire borders region (or further afield, I’m not fussy!), I’d like to announce that I’m talking at an event on Tuesday evening, June 6, entitled ‘My Life With Autism’.
It’s hosted by Autism Wessex at Portfield School from 7:00-9:00pm and it’s free, but as spaces are limited you need to book tickets from the following link: Get Involved.
I will be talking about my journey to diagnosis, the difficulties of growing up undiagnosed, work, parenting, and day-to-day life. Along the way I’ll provide hints and tips on living with the condition that have proved helpful in my own life. There will also be the opportunity to ask questions.
I hope to see some of you there and thanks for reading!
I have mentioned before the overwhelming focus on children in the literature on autism, and the corresponding lack of study on adults with the condition. Indeed, researchers know next to nothing about autism and sex, and autistic parents, which seems odd given that one often leads to the other and the consequences can be profound and life-long.
Studying the issue of parents with autism would be helpful in two major respects. First, it would ensure that autistic parents received appropriate guidance and support for the demands of parenting, which, let’s face it, is difficult whether you are on the spectrum or not. Secondly, it might help to normalize the notion of autistic parents and remove much of the stigma surrounding this section of the community.
If you go online, much of what is written about autistic parents is by adult children of these same parents, and almost universally the experience seems to have been less than positive. Some say allowing autistic parents to raise neurotypical children is a form of abuse, and others that autism constitutes a ‘parenting disability’. There are even sites that claim autistic parents inevitably raise emotionally and psychologically damaged children. As an autistic parent, with an autistic wife, and raising an apparently neurotypical daughter, all I can say is: ouch.
On the other hand, I neither agree with nor believe any of these statements. For one thing, many of these parents haven’t received a diagnosis of autism by any other authority than their children, who might not necessarily be able to disentangle autism from other conditions such as narcissism, avoidant personality disorder, OCD, and just being a plain bad parent; and for another, people who have had an unhappy childhood and a strained relationship with their (autistic) parents are far more likely to write a blog about it than people who had a happy childhood and good relationship. Thus the picture is skewed away from reality because of the very lack of objective input from academic researchers mentioned above.
It’s also important to note that these apparently awful autistic parents had not received a diagnosis and therefore did not know they were autistic – and to me, knowing is everything. If you know you have autism, you know to work on certain areas in which you’re weak; you know to regulate your behaviour in order to meet the needs of your child; and you know to get help and advice from others. Autism is therefore no barrier to being an effective parent.
My belief is that your parenting ability comes down to you as an individual. There are some fantastic autistic parents out there and some terrible neurotypical parents, just as there are terrible autistic parents and fantastic neurotypical parents. The point is, a diagnosis or otherwise doesn’t dictate an individual’s ability to parent or the long-term outcomes for their child.
I was lucky enough to be interviewed by Spectrum Magazine for an article on parents with autism that discusses these very issues. It is well worth a read, and contains some beautiful photos of my wife and daughter, and unfortunately some of me as well. Here’s hoping that these holes in the story of autism will soon be filled.