Autism Acceptance – What It Means To Me

Autism acceptance is a fantastic concept. But if it is used to stop parents from implementing early intervention strategies, it can be a big problem.

 

When you start a blog, you expect a certain amount of disagreement. Growing a thick skin is just something you need to do. And I am fine with that. I allow any comments on my blog whether or not they agree with me and I only delete them if they are either outright abusive or if they say something unpleasant about someone else’s parenting. Luckily this has only happened a couple of times in about five months so we’re doing well everyone!

But when I do get abuse or disagreement (and as I’ve said before, disagreement is totally ok and healthy) it is always about the same topic. It was actually pretty unexpected to me when I started, how many people dislike the whole idea of early intervention for autism.

It’s always pretty similar. The usual source is the mother of a high functioning child with a vocabulary of thousands and thousands of words by the time they’re two. She will say to me that her child doesn’t need fixing. He’s twelve and not potty trained. He’s never had a friend. But he doesn’t need fixing. I don’t know my child at all and I am harming him so much by forcing him to be someone he’s not (by encouraging him to read books I guess? And do puzzles?). Apparently I am also making him miserable (he doesn’t LOOK miserable but again, what would I know?)

Well I am sure all these mothers are doing a great job with their kids. Their choices are theirs to make, since it is them and their children that will live with the consequences. And I won’t even argue about the fact that they apparently know my child better than I do (how would I know anything? I only spend twenty four hours a day either with him or in the next room?). But I do feel strongly about the importance of early intervention and the benefits it can have. And it doesn’t matter one tiny bit if your child is labelled ‘high functioning’ and has an IQ of 160 or is low functioning and doesn’t understand when you tell them to ‘sit down’. All forms of autism have many challenges, and early intervention can go a really long way in helping them with those challenges.

What is Autism Acceptance?

Anyway after that I was thinking about acceptance. You see, I have been working on what I thought was acceptance for a while. The hardest one is this whole ‘family envy’ thing (I’m sure you know what I mean). Career envy, handbag envy, wearing non-yoga-pant-clothes envy, getting-to-wear-makeup-sometimes envy. I had gotten over all of them. The family one is the hardest. It’s damn hard to let go of the picture of a happy family sitting and arguing around the dinner table.

Michael is one of the happiest little boys in the world. My New Year’s Resolution was to learn to accept everything. My life, Michael’s limitations, just everything.

And I started reading up on autism acceptance. The Autism Acceptance movement is all about accepting autistic people as members of a neurological minority group who are entitled to the same rights as everyone else, with brains that are perfectly fine the way they are. I’m just not sure that I am capable of that kind of acceptance. Maybe with time?

There is no such thing as a perfect brain

Now I am all for autistic people having the same rights as everyone else. I think that should go without saying. But saying that their brains are perfectly fine the way they are…what does that even mean? Is anyone’s brain perfectly fine the way it is? I would love to inject some patience into mine…maybe also a better ability to listen to whingeing without setting off my fight-or-flight response…

My son’s brain, when we started early intervention, was very far from fine, let me tell you. There were enormous meltdowns. No communication of any sort. No play or learning at all. IQ was just high enough that he could move around, but no attempts to make sense of the world around him. And that’s not even getting started on the hyperactive behaviour, the ADHD, the sensory issues (that we are of course addressing and helping him with). What about anxiety and depression? He doesn’t have that, but many children do.

When people say their children are perfect the way they are, I think what they really mean is that they are perfectly loved no matter how they are. And that is right and as it should be. But saying ‘perfect’ here is very misleading, because perfection leaves no room for improvement.

The Serenity Prayer

Reinhold Niebuhr said that to be happy we must accept the things we cannot change, have the courage to change the things we can, and have the wisdom to know the difference. It has since been widely applied in the twelve-step programs and is known as the Serenity Prayer.

It is one of my favourite sayings, and it sounds deceptively simple. But it is so difficult to put into practice.

I live my life as an autism parent by the principles of the Serenity Prayer.

I think it is singularly appropriate since the life of a special needs parent, or many of our children, can be every bit as traumatic as the life of the people that rely on the twelve-step programs. And it leaves room for flexibility – I can accept things as long as I cannot change them, but once I can (and Michael changes all the time) then I find the courage to do so. It also means that as he gets older and there is less I can change (but also less I may want to change, as some of those fabled benefits of autism may come out) the form that ‘acceptance’ takes for me will change as well.

I wouldn’t change a thing and other lies

What drives me insane is this feeling among parents with special needs that they have to accept absolutely everything. Or else be accused of not really loving their child. The other corker is ‘autism isn’t a tragedy, people’s attitude towards it is’. Actually, it can be a tragedy. Like a really major tragedy that changes the entire trajectory of a child’s life and that of their parents. Being able to write memes with puzzle pieces and rainbows does not mean you have the right to tell people what is or isn’t a tragedy for them. It is not a tragedy for you maybe. It definitely isn’t a tragedy for us. But it is for other people, and they should be able to grieve without judgment.

You see to me acceptance means something entirely different. In dialectical behaviour therapy, the term ‘radical acceptance’ has to do with acknowledging reality. Not saying that the reality is ‘good’, just that it exists. For example, autism acceptance actually just means that you accept that your child has autism. So they have these particular challenges and behaviours that are commonly associated with this condition, to whatever degree that they have them. It does not, strictly speaking, entail saying that they are all great challenges and you would never change a thing.

My version of autism acceptance

So really when I stop fighting reality, I am practicing autism acceptance. If I stop denying that something is wrong, and put my child into early intervention, that is autism acceptance. When I get over my feelings of ‘it’s not fair’ or ‘it shouldn’t be this way’, I am on my way to acceptance. And this form of acceptance I am working on every day. My son’s smiling face and happiness, as well as his constant progress in therapy, are my shining beacons helping me through this journey.

But the other kind of acceptance? Saying that nothing is wrong and never has been? That parent that refuses to label their child as autistic, doesn’t get them early intervention because ‘nothing is wrong with them’, but then insists that their mainstream school fit around them entirely as they throw massive meltdowns over and over? That sounds like denial to me…

All the Bullshit

Truth is, if your child spent the day trying to bite and scratch you, and then you write on your blog that you wouldn’t change it for the world, I call ‘bullshit’. If they get up at 4am every day or are up for three hours and you say ‘everything is perfect as it is’, that is more bullshit. Of course you would. You are lying to yourself and to all of us. And you are doing it because you are confusing ‘my child is perfect as they are’ with ‘I love my child perfectly as they are’.

You think if you would change anything about your child, it means you love them less. And that is just wrong. It puts a completely unfair burden on a parent – and an ordinary parent would be highly unlikely to write stuff like that. They spend half their time complaining about the latest tantrum their child threw. Why can’t we?

If there were a painless, no side effect, guaranteed way for you to wave a magic wand and take away the biting and kicking behaviour, you’d do it in a heartbeat. What, you wouldn’t change anything? Not get rid of the anxiety? Or the depression? You wouldn’t improve their cognitive skills so they are at least average, or make it easier for them to process information, or to understand what you are saying to them?

Why Parents Might Want To Help Their Children Change

My real experts when it comes to what I should or shouldn’t accept have always been autism mums. I know a few that have older children. While some have very high functioning or very low functioning children, and their experiences may be quite different to ours, some are in a similar situation to us.

One autism mum in particular I respect very much. She told me early on that she never accepted anything while her son was growing up. He was in therapy all the time, after the age of four when he was diagnosed. She said she was incredibly pushy, never gave up, never accepted bad behaviour or that he just ‘couldn’t’ do something because of autism. He just needed to be taught differently, and sometimes at a different pace.

He is 17 now, and has moderate autism (the same as my son) but he has his driving licence, finished the HSC (in life skills) at a mainstream school, is learning to be a chef and is about to do his GAP year in Europe. Also has been in a relationship and is very good friends with his brother. No mental health issues to speak of. He very obviously has autism, there is no attempt to hide it. His mother is a great advocate for autism awareness in fact. But he is leading a great life, full of all the experiences that it can offer. That is all that I want for my son.

What to accept and what to change?

So how do you know, as a parent, what things to accept, and what things to change? Where do you get the wisdom to know the difference? And if you do find something that needs acceptance, how do you get there?

There is the great challenge in parenting. Our answers to those questions will vary child to child. Even the age is important. You can change a lot more during early intervention while the brain is still elastic. But you can’t change everything, and trying might damage your child. Labels are entirely irrelevant here, it is not a high-functioning vs low-functioning argument. That is what parenting is for, to know the difference, on a case-by-case basis.

It is when we know for sure that we can’t change something, then it is wise to accept it. Because what is acceptance, how does it start? By acknowledging that there is nothing better out there, and by the end of ‘desire’.

What Acceptance Might Look Like

Say you have been doing therapy for six months. Your little one isn’t imitating sounds yet. You might decide ‘my child isn’t likely to start talking any time soon.’ You accept it. Great. You can now start working on solutions, ways around the limitation. Work on other forms of communication. And finally, finding all the many positives that exist in your child, whether in their autism or outside it. There are great non-verbal communication moments you can have together – and believe me we’ve had a few. But we still intend to push for words at every stage we can. And if they do start to appear, then that acceptance that he is non-verbal will go right out the window.

Some things you will unequivocally want to change every time – things like biting, scratching, aggression or the inability to communicate (notice I didn’t say talk). Others you will not be sure about. And that is your prerogative as a parent. Pretending that there are no negatives that come with autism is not autism acceptance. It is delusion.

The things we refuse to accept

For us, the first priority has always been Michael’s health. So the things we refuse to accept are things like a limited diet – since this can and has impacted his quality of life in a very real way. We persevered with that and now he can eat absolutely anything, although of course he is not a robot and has things he likes (steak) and things he doesn’t (beetroot).

Other things I refuse to accept are an over-reliance on the iPad. I will take it away with no compunctions and he can scream for half an hour if he likes. He knows this and usually I get a five second protest whinge. And of course I don’t tolerate inactivity (not that this is usually a problem). If he goes to the park and stays on the swing the whole time, I will encourage him off there, and I will try everything in my arsenal to encourage running around.

Another priority for us has been communication. I refuse to accept screaming as a form of communication. My child used to scream a lot when it got him what he wanted. Now he doesn’t because I completely ignore it. Instead he takes my hand and leads me where he wants me to go. He has recently started reaching in the direction as well, which is wonderful to see, and he is learning PECS.

A Two Year Old Does Not Know What Is Best For Them

This is a truism. It is so obvious, but for some reason there is a ‘parenting’ movement at the moment about treating two year olds (whether or not they have autism) like they have life figured out, and if anything are way more intelligent than their parents.

And I refuse to accept that my son knows what is best for him. Every crusader fundamentalist blogger that has ever gone to war for ‘acceptance’ says we should let our kids just have fun. Do what they want. Well, to me that is a recipe for him to remain with a IQ of about 30, endlessly locked into a world of running backwards and forwards and looking at his fingers. When I leave my son alone, he does not learn. He isn’t happy. He is bored, miserable, and stuck in a world of repetitive behaviour that he doesn’t even like that much!

I mean he’s under three years old. He has no idea what he wants, beyond the next YouTube video. You parent a thirteen year old differently to how you parent a three year old. This should go without saying, but I feel like some people need that reminder.

My Form of Acceptance, My Consequences

So yes I will take him out of that world. I will encourage him to play with toys in different ways, to read books, to do puzzles. Some of these things made him scream at the beginning like I was cutting him open slowly. Now they don’t. He even has favourite pages in some of his books. Every day I practise imitation with him because imitation skills are vital to learning anything, including speech. Also because once he learns it, he quite enjoys it. But mostly it’s the learning thing.

As long as we live with the consequences of our choices with our kids, we are free to continue to make our own choices. Within reason of course (anti vaxxers, I mean you). So this year I vow to practise autism acceptance in my way, and I promise it will be different to how I practise it next year or ten years from now.

The Perfect Child

You see my job is not to think that my child is perfect all the time. I do think that he is Perfectly Wonderful. And I do make sure that he is Perfectly Loved (and knows it). But not Perfect In Every Way. Neither is it my job to make sure that he is perfectly happy. It is my job to make sure that he can one day make HIMSELF perfectly happy, with as little assistance from me as possible.

To paraphrase from The Importance of Being Earnest’ if you say that my child is perfect as he is that leaves no room for development. And I intend for him to develop in many directions.

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