I’ve read this so many times now. And it gets more tired every time. “Autism is not a disability, it’s just a difference.” It’s oft-quoted by the more strident and vocal autistic campaigners, who are affronted by the mere hint of autism being seen as disabling, or an encumbrance for the autistic or their parent. They talk of the gifts of autism, of how it’s only a different way of thinking and cite all the famous people either with it, or who are retrospectively suggested to have been autistic.
So who am I to say different? I am an autistic adult, parent to two children who are also both autistic. We are all considered “high-functioning” (that over-quoted misnomer). Therefore I speak from two perspectives, as an autistic adult dealing with the difficulties autism has given me, surviving in a world that doesn’t understand me and as a parent of two children with immense difficulties and for whom I have to battle constantly, to get their needs met.
I am all for singing the positives of autism. We do have them and some have splinter skills or special talents (my family included!). I also believe in selling the positives to a child old enough to be told of their diagnosis, because childhood is a time when people are finding their place in the world and need to build confidence and self-belief. This can apply to newly diagnosed adults too, who are re-evaluating their life to date through new eyes.
I’m still struggling to get my head around what “ableism” means. I thought I knew, but it’s used at the drop of hat, sometimes about such subtle and complex scenarios, to the point I don’t know any more. It’s the hotcake of the autism community, well at least among those strident campaigners. All I can tell you is the truth. I’m not interested in arguing about whether “person with autism” or “autistic” is more appropriate (although I much prefer the latter), I’m more interested in getting understanding of autism and the adjustments we need, out there. Because all the while they are lacking, the world is way more challenging than it needs to be for autistics.
So I want to ask some questions, of those autistics who insist that autism is not a disability, not a deficit. How is it not disabling when…
- …my youngest child cannot understand what peoples’ intentions are, leaving her to constantly assume negative things, leaving her having a meltdown that lasts up to 2 hours?
- …my eldest child (at the age of 13) has needed to sit on my lap for 4 hours sobbing, after first circling the room endlessly downloading what’s happened, because of the stress of her school day?
- …I go to a meeting and my brain cannot handle all the voices contributing and it leaves me unable to process what’s going on properly, and afterwards I need days to recover?
- …my youngest child has aggression and hyperactivity that cannot be curbed and which leaves me at times getting punched and hit with objects?
- …we all have sensory processing disorder, causing much discomfort and difficulty?
- …my intelligent eldest child with a superior vocabulary, is excluded by peers and cannot talk about things at their level, leaving her isolated and lonely?
- …my youngest child has to control everything and everyone around her to an extreme degree and does not respond to any normal parenting technique, leaving her potentially unable to find a successful place in society?
- …my eldest child has such bad OCD that she repetitively questions me until I think I will go crazy from no let-up and why she wastes hours on her OCD habits daily?
- …I am overwhelmed instantly by every meltdown or incessant questioning episode from either child?
- …my children are unable to cope with the “bad stuff” in the school curriculum and are in fact traumatised by it, left with nightmares, intrusive thoughts and panic attacks?
- …we can’t bear busy, chaotic places, they tire our brains and make us overwhelmed?
- …my communication is constantly misunderstood and criticised by neurotypicals, causing constant challenges and making things way harder than they should be?
- …I suffer ‘Aspie burnout‘ with such ridiculous regularity, that I feel obliged to refer people to Christine Miserandino’s “Spoon Theory“ on a regular basis?
- …my children are emotionally and developmentally delayed, meaning they don’t have a full understanding of potential dangers (yet have irrational phobias that affect their lives) and cannot be left alone?
- …my eldest child cannot handle plans changing and will shriek, cry and wail in an overwhelming way when they do, no matter how many times I have explained why life is like that?
- …my youngest child hyper-focuses on sources of anxiety and will find everything a negative?
- …my youngest child has sleep problems and cannot sleep without melatonin?
- …why both my children are on medication for anxiety because nothing else has worked?
- …I feel like an utter alien in the world, my differences are so apparent to me and it seems there is nowhere I fit?
- …my children have all-consuming phobias that cause them to panic?
- …my eldest is so offended by her diagnosis that she refuses to accept it?
- …my eldest was bullied for her differences in school even though nobody knew she was autistic and someone once, outright incredulously asked her if she was autistic?
- …my eldest was so stressed in high school that she was unable to listen to her body and wet herself several times?
- …my eldest has been off school for 18 months and counting?
- …my youngest was unable to integrate into mainstream because it stressed her too much?
- …my children don’t have any idea or understanding of the impact they have on others?
- …my children won’t go out with their dad if I don’t go too, because they have separation anxiety?
- …I was repeatedly passed over for promotion in work and was once sent on a training course in how to interact with people (pre-diagnosis)?
- …my children come at me with multitudes of worries day and night that they can’t stop thinking about, to pour onto me?
- …why I’ve had to buy PECS social stories, punch bags for aggressive behaviour and sensory toys for my child?
- …there have been times when I wanted to take my brain out of my head and leave it on a shelf just to get some peace?
- …my youngest has major meltdowns and rants in public which show no signs of stopping at 11 years old?
- …I find it so hard guessing when it’s my turn to speak on the phone and end up butting in accidentally and hate phone calls?
- …when my youngest has a meltdown which overwhelms me she won’t let me escape to another room, she will follow me, screaming at and hounding me?
- …why I have had endless battles and tribunals to get statements/EHCP’s, diagnoses, school places, support and more?
- …why my eldest has no initiative whatsoever and needs to ask me endless daily minutiae to the nth degree?
- …how even a simple planned or spontaneous outing can end up not happening due to meltdowns and other challenging or exhausting behaviour?
- …you can get a diagnosis of autism or Asperger’s syndrome, which by the nature of the diagnostic criteria, describes deficits and impairments?
I could have made that list so much longer, but I think you get my drift. As a parent of autistic children, I can honestly say that I frequently go through hell with them. It is interspersed with the odd moment of humour and there is a whopping amount of love, but the negatives far outweigh the positives and that’s the simple truth. Not only seeing their difficulties and wanting so much to make things OK for them and feeling irrationally guilty for giving them autism (I had no idea I was autistic when I started a family), but also the awful, health-destroying, relentlessly challenging behaviour I have to deal with day-in, day-out. The sort of behaviour that is unimaginable to some and makes me wonder how I am still standing.
And don’t forget, being autistic myself, I try to see off as many problems as I can, I know in a general sense what things to avoid or will help, but still there is so much you cannot account for, so many difficulties that will still happen and so much behaviour over which you have no control.
I worry about my children. They have difficulties I don’t remember having as a child. They seem to be more autistic than me, I see traits that I desperately hope will ameliorate as they grow, I fear for what will happen if they don’t. And I fear for what might happen when I am no longer here for them. Who will care? I have spent their lives anticipating and catering to their needs, nobody else will have that depth of care for them. So many of their difficulties will not be understood and will be brushed off by others, even those designed to help.
I saw that today, as I have seen so many other times. In meeting a professional specifically intended to advocate for children. She didn’t get it and I could see that she would never fathom what she was doing wrong. So please, don’t tell me it’s not a disability, that it’s only a difference. I don’t want to be the same as everyone else, because from my autistic eye-view, I don’t like the way a lot of people are anyway. But there are so many ways in which we are so disabled and it’s definitely not all down to the social model of disability, it’s down to our brains and our internal experience. The world is never going to be able to change into everything we want or need, because there is too much of what we endure, that is nothing to do with the world.