Dear 'Autism Parent'
When I found out that my son was autistic, it changed my world. I didn’t know anything about autism at that point. I and his dad wanted to know as much as we could find out.
What support could I get?
It seemed that I wasn’t going to be given that information readily! We had to find out about and fight for every bit of support: benefits, help at school, respite, and more.
So, go into battle. If at first you don’t get what you need, appeal. There are people and organisations which can help you do this.
The little support that existed for autistic kids (and adults) and their parents has been hacked away by years of Tory austerity cuts. If we fight not just our own individual battles but unite with each other, we can start to undo the damage. There are some inspiring examples of successful campaigns against cuts and for increased support.
What caused this?
I wanted to know what had caused my son to be autistic. I wondered whether it was his birth, during which the cord wrapped around his neck, his Apgar score was 3/10, and he was whisked away into the paediatric intensive care unit. The GP said that it almost certainly wasn’t. I have learned since then that we still do not know what causes autism, although scientists agree that there is an element of heredity. So yes, like you probably have, we thought about all the other members of our families, including some long gone, who were probably autistic.
But more importantly, we learned that although we would be interested to know what causes autism (and what causes neurotypicality), we don’t need to know that in order to do the best for our son. His rights, and the rights of my other autistic family members, do not depend on identifying a cause. Why would they?
I know it is easy to be taken in by well-written articles that use scientific terminology and claim that anything from pesticides to vaccines cause autism. But please don’t be taken in. And in particular, don’t take reckless action on the basis of these claims, for instance by not having your children vaccinated. The ‘evidence’ that vaccines cause autism has been thoroughly and utterly discredited.
Remember that coincidence does not prove cause. An autistic child usually starts to show autistic traits at around the same age that they receive common vaccinations such as MMR. So some parents conclude that the vaccine caused the autism. But that does not follow logically. My son started showing autistic traits at around the time that he started going to a childminder. Does that mean that the childminder made him autistic? Of course not!
And sure, private pharmaceutical companies have a financial interest in covering up flaws in their products. But the huge amount of scientific investigation into claims of vaccines causing autism would have uncovered that. It didn’t. And now, it is the likes of anti-vaxxer Andrew Wakefield who are making money out of parents and their fears.
What treatments should I use?
I wanted to know what treatments and interventions were available. I saw adverts for something called Applied Behavioural Therapy (ABA) which looked interesting, although forty hours a week seemed a bit intense.
But before deciding on a treatment, we had to know a bit more about what autism is. If autism is not an illness, if it is not harmful, then why would it need to be treated?
Our son, like most autistic kids, does some atypical things. Many of these are harmless - such as skipping and humming, and walking on his toes. There is no need to punish or suppress these because there is nothing wrong with them. Where treatments and therapies set out to discourage non-harmful autistic traits, then that seems to me like a throwback to the days when schools tried to force left-handed children to write with their right hands. We look back on that now as barbaric. I think that one day, we will look back on telling autistic people to “Look at me when I am talking to you!” in a similar way - forcing a child to do something that is against their nature and which they find distressing, for no good reason.
But there are some autistic traits that are harmful, right? Perhaps your kid repeatedly bangs his head against the wall, or scratches herself until she bleeds, or is violent to other kids or to you. I think it is helpful to look at these things not solely as traits of autism, but as traits of autistic existence in a distressing world. Our experiences take place not in isolation within ourselves, but in interaction with our surroundings. If a person’s brain-wiring is such that the level of sensory input distresses them, or they do not understand what the person with a different brain-wiring is trying to tell them, then the result can be very unpleasant. But it is the result not just of autism, but of the impact of the environment on an autistic person. I am not suggesting that the answer is always going to be as simple as turning down the lights, dressing in looser clothes or communicating in pictures (although in some cases, this will be a big step forward); rather, I am cautioning against ‘therapies’ that are based on suppressing autistic traits and rewarding typical behaviours.
And that brings me back to ABA. I looked into it, and I listened to autistic adults who had experienced it as children, and I found out that it is based on the same theories as the conversion therapy that aims to turn gay people straight. No thanks.
I’m not against therapies. Both my son and I (and other autistic family members) have benefited from various therapies, including music therapy, speech and language therapy and cognitive behavioural therapy. But there are some out there that claim to help you but are very damaging. If you have a strong stomach, look up chelation, MMS and hyperbaric oxygen therapy. These are pretty obviously cruel and abusive, but there are also others less obviously so. I’m not going to give you a long list of interventions to try and interventions to avoid. Instead, I just urge you to look around and think, and in particular to seek out the views of autistic people on their experiences.
And I’d suggest that anything that claims to ‘treat’ (or, worse,’cure’) autism is best avoided. Autism itself can not be treated or cured. It is probably your child’s distress that you want to treat, not their autism.
Perhaps the most helpful thing is to accept an autistic person for who they are, to help them live at ease in their world, not to try to remake them.
Parents vs Autistics?
An increasing number of autistic people are speaking out against the way that society views autism. They are asserting that autistic brain wiring is a naturally-occurring neurological variant. They acknowledge that autistic people struggle in a society that does not meet their needs. They want support and rights and social change, rather than to be pathologised or cured.
Some autistic adults are speaking out about experiences they had as children, which they feel alienated them, rejected them, traumatised them. Some of this involves criticising things that their parents did, or even criticising their parents.
They deserve to be listened to, not dismissed. When autistic activists raise issues like this, whether about their own experiences or in support of others, they are trying to ensure that autistic children do not have to go through the same distressing experiences that they did. They want to educate and help you.
It is a mistake to label them as ‘anti-parent’ or to dismiss their concerns as ‘parent-bashing’. A few people do comment in intemperate terms and can come across as unduly hostile to parents. But that’s what trauma does. It’s not a constructive way forward, but it does not negate the important points that autistic people are making. (In fact, one reason that it annoys me is that it obscures those points.)
Of course I know you love your child. Of course you would never knowingly hurt them. That is true for all but a tiny minority of parents, and my default assumption is that this tiny minority does not include you. But when some parents say that they hate their child’s autism, some autistic people will draw out the logic of that.
I know that parenting autistic children is difficult. It can be really really difficult. But it’s difficult for the kids too, and when the likes of the Daily Mail publish articles on how terrible it is that a successful professional woman has had to take a career break because her autistic son is a monster, or when a parent videos their autistic child having a meltdown and posts it on social media, then I’m sure you can see how autistic people and their allies would see that as negative and unfair. That’s where terms like ‘Martyr Moms’ come from. I think it is an unhelpful (and sexist) term, but I get what it is getting at.
Severe vs mild autism?
Sadly, there are some people and organisations who encourage parents of autistic kids not to listen to autistic adults and to see autism as a curse or a tragedy or a form of brain damage, not as a naturally-occurring neurological variant. They oppose the neurodiversity approach and want you to reject the idea of autism as part of a neurologically diverse humanity. Some of them want to sell you products and exploit your fears. Others do not, and genuinely believe in what they are arguing.
One of their key arguments is that adult autistic activists are only ‘mildly’ autistic, are ‘high-functioning’ and do not understand or speak for ‘severely autistic’ people. I have used quote marks around these terms because they depend on an understanding of the autistic spectrum as being linear: a straight-line scale from mild to severe. Autism isn’t like that. Autistic people can function better than average in some areas of their lives and worse than average in others. Just because an autistic adult can argue their case on Twitter, that does not mean that they can live independently, or hold down a job, or leave their house, or speak. So they may well know what it is like to suffer great distress and to be unable to do things that they want to do. Moreover, some of the hardest-working campaigners for the rights and interests of highly-dependent autistic people are their so-called ‘high-functioning’ fellow autistics.
‘Severe autism’ is a problematic term because it can mean various things: perhaps that a person has an intellectual impairment or serious medical condtion as well as being autistic; perhaps that their sensory sensitivities are so different from the typical that they are in almost constant distress; perhaps that their means of communication and interaction are so divergent from typical people’s that those people think they can not communicate or interact at all. Similarly, if we label some people ‘low-functioning’ then their abilities get overlooked; and if we label others ‘high-functioning’ then their needs get overlooked. It is probably more helpful to describe people in terms of their needs rather than the severity of their autism.
You might not agree with me on this. That’s fine. I’m not too hung up about words. But I am hung up about attempts to stop parents of autistic kids from listening to the views and testimonies of autistic adults. I wish I had known (or knowingly known!) some autistic adults when my sons were young, instead of only finding them when I found out that I was one of them. Their insight would have been so valuable. I might have known sooner why most autistic people dislike the terminology that they 'have autism' and dislike the puzzle-piece logo, and I might have known sooner that some organisations which claim to support autistic people actually demonise, pathologise and in practice harm autistic people.
The disabled people’s movement has long held the slogan, ‘Nothing About Us Without Us’. Autistic people demand this too. There is a great deal talked about autistic people, and relatively little attention to autistic people talking about themselves. So we write and we speak and we want to be listened to. Sometimes, we want our own autistic-only (or neurodivergent-only) forums in order to facilitate this. That does not mean that autistic people are excluding parents, rather that they are including autistic people. There are plenty of other forums in which everyone can work together.
The way forward
I wrote this because I think that parents and autistic people (and the many people who are both) can work together to fight for autistic rights, and I am shocked by the ferocity of efforts to turn parents against autistic advocates.
Let’s have parents and autistic activists campaigning alongside each other for positive demands that we can unite around and which will radically improve our lives.
I hope that we can agree to support: a reversal of savage government cuts to Special Educational Needs and Disabilities funding; stronger legislation against discrimination against autistic people (in the UK, for example, adding ‘neurological condition’ as a tenth protected characteristic under the Equality Act); reopening of quality support services that have been forced to close by cuts and a big expansion of such services; mandatory training for all education, health and other public service workers about autism; freely-available child and adult care that is appropriate to autistic needs and close to home; ‘universal design’ standards in the built environment, to make it as accessible and non-distressing as possible; suitable jobs for autistic people who can and want to work; adequate benefits for those who don’t; properly regulating ‘treatments’ and therapies; and bringing the pharmaceutical industry into public ownership and under public scrutiny.
Just imagine if we could win all that. Together.