Parents, I know that learning about your child’s autism can be a stressful experience, to say the least.  Maybe you’ve told doctors and professionals about your concerns, only to have them dismissed.  Or maybe your doctor sent you straight along the correct path to a diagnosis, but still you found yourself having to sit through a series of questions and assessments you didn’t understand, before being briefly issued a label with only a little bit of explanation – leaving you essentially to fend for yourself.

Maybe you’re already busily engaged in trying to enroll your child in the (actually highly controversial) early intervention services that you’re now being told are essential and indispensable if your child is to ever have a good life.  Maybe you’re struggling to learn all of the autism world’s incomprehensible jargon and mysterious acronyms.  Maybe you’re struggling as your expectations of what lies ahead, as your expectations of the future, drastically change.

It’s a lot to process.

But at some point, questions about disclosure may come up.  You may be asking yourself if you should tell your child about the autism diagnosis, and if so, when you should reveal that label.  You may be wondering how you should have that conversation, and how much detail to provide.

This post is my attempt to think about how we should answer these questions.

Identity

First, we need to recognize that autism is part of us – it is part of what makes us who we are.  Autism used to be called pervasive developmental disorder for a reason – it really is core to our personalities.

I wasn’t diagnosed until I was eleven, but before I got the diagnosis, I already knew I was different from others around me.  I was awkward and had horrible sensory sensitivities.  I was socially isolated.  It was quite patently obvious to anyone who was looking that I didn’t fit in.  That’s pretty much standard for autistic people who haven’t been diagnosed yet.  As Clare Sainsbury, another autistic adult, says in her excellent book, Martian on the Playground:

“Any child with Asperger’s who is old enough to understand a simple verbal explanation of their condition is also old enough, if they don’t get such an explanation, to notice that they are different from their ‘normal’ peers, and also that they have difficulty doing things which seem to be easy for ‘normal’ children.  Often they will infer that there is something wrong with them.”

Thus, we don’t really have the option of hiding the fact that someone is autistic.  We can just leave them without an explanation for why they are different.  Without the autism label, it’s easy for people to start blaming themselves.  That’s a path towards self-hatred and depression, which is not where we want to go.

Now, Sainsbury was writing back when Asperger’s was considered separate from autism.  Some may wonder whether everybody on the autism spectrum is capable of pondering these subtle questions of identity and self-worth, and the only reasonable answer to that question is that some of us probably aren’t.  But I still don’t see why people shouldn’t have information about their neurological type, just in case – I’ve sometimes been surprised by how much people can understand.

Autism is part of who we are, and I believe that accepting autism as part of our identities can be a crucial prerequisite to living well on the spectrum.  If we don’t accept our autism, I think it’s fair to say that we aren’t accepting ourselves.

Advocacy

Another reason to provide the diagnosis is self-advocacy.  Eventually, at some point, autistic people need to learn about the ways in which we are different from others.  We need to be able to understand our own needs, because otherwise we’d be unable to meet those needs.  Even if you, as a parent, are capable of advocating on behalf of your autistic kid in childhood, you may find it much more difficult after your child has entered adulthood.  People need to be able to advocate for themselves.

However, advocacy is a difficult enough skill for neurotypicals to master, and it can be even harder for an autistic person.  Good advocacy requires practice.  It requires a level of knowledge of oneself, and a comfort with oneself, that can only come with time.  Thus, we need to learn about our diagnosis early enough to become comfortable advocates.

Understanding

We may also need to use the diagnosis to ensure that others understand why we behave as we do.  Autistic people behave atypically in social situations, and neurotypical people are famous for the formidable social-cognitive resources you can draw upon.  When you spot atypical behaviour, you’re going to come up with an explanation for it.  However, that explanation may be totally incorrect, and when neurotypicals are trying to explain autistic behaviour, without realizing that autism is involved, it’s probably fair to say that the explanation is ordinarily incorrect.  Neurotypical explanations are, as a default, calibrated for neurotypicals.  When autistic behaviour gets explained, it is often dismissed as hostility, defiance, dislike, etc.  Only revealing the diagnosis can help some neurotypicals move away from an intentional explanation, move away from blaming the autistic child for willfully behaving badly.

Of course, one can hardly use the diagnosis to get this understanding from others if one doesn’t know about one’s own diagnosis.

OK, so how do we do this?

Hopefully by this point I’ve persuaded you that we do need to provide information about the autism diagnosis, but that still leaves important questions unanswered.  How do we reveal the diagnosis?  When?

Well, if we come back to that point about autism being a part of someone’s identity, I think the key point here is to present the information in such a way that it can be assimilated naturally into one’s identity.

I don’t think that hiding autism for years, and then sitting down to have a big conversation about it, is the way to go at all.  Not only does one risk waiting too late – such that the autistic person has already realized that they are different from others, and started blaming themselves – but I think such a conversation sends the wrong sort of message.  Even if the words you speak are about acceptance and autistic people’s worth, doesn’t the fact that the autism was concealed send a message?  Doesn’t that alone suggest that autism is something to be ashamed of?  I fear that even the simple act of making a big production of the great diagnostic reveal hints at the stigmas that still surround neurodivergence in our society.

No, we shouldn’t make the autism an awkward subject, something to be avoided, something to be hidden.  That sends the worst message when it comes to mental health.

I say that we should treat the autism as it is: as a simple and natural fact.

How that looks will, of course, depend on the age of the autistic person.

If they’re still very young, or if their communication abilities are still limited, I think simply not hiding the subject of autism should suffice.  Mention the word “autism.”  Freely refer to the child as “autistic.”  Not in negative terms, of course – the context should be positive or neutral – but without a great deal of fuss or drama.  Make it a natural fact.  As the individual grows older, provide additional information as seems appropriate.  Mention useful facts at useful times.  Answer any questions the individual might have.  Teach useful skills when they’re needed.

Of course, if the individual is older, you’ll need to have a conversation and provide more information straight away.  But again, I think presenting the information without a great production is best.  If you have unconfirmed suspicions about the possibility the individual may be autistic, have a discussion about these suspicions and go through the diagnostic journey together.  If you already have the diagnosis in hand, better late than never – have that conversation as soon as possible.

A Cautionary Note

However, if I can pour a little bit of cold water on everything positive I’ve been saying about the importance of revealing the diagnosis, we can sometimes, if we’re not careful, start to expect the worst for diagnosed autistic children.  This is something I’ve written about more extensively in another post.  There are many reasons we might be doing this.  Perhaps it’s the demoralizing effect of the stigmatizing, destructive language that pervades the pathology paradigm.  Perhaps it’s the horror stories we hear about poor adult outcomes.  Perhaps it’s the way some predatory private operators, in their efforts to peddle their miracle cures, portray autism as vicious and destructive in and of itself.  Perhaps it’s the way we see autistic children slowly becoming dependent on prompts and supports from others.

Whatever the reason, it seems like the diagnosis, and the ideas of disability and deficit bound up in it, make it easy for us to lose hope for the future.  One might become resigned to a reality of having to support an autistic person playing video-games in the basement forever.

That’s the last thing we want to do.

While we want to make sure that autistic people can accept themselves as autistic people, and that they will be fully informed of their own neurotype, we don’t want the diagnosis to crush all of our expectations and aspirations.  We might have to adjust those aspirations, and redirect them, but we still have to expect success.  When we expect failure, we create a self-fulfilling prophecy: when nobody expects us to succeed, why would we bother trying?

Thus, as we reveal the diagnosis, we need to make sure to do so in a way that presents it as a simple and natural thing.  We need to do it in a way that allows the autistic person to integrate it naturally into their identity.  However, we also have to monitor ourselves carefully, and make sure that we aren’t inadvertently suggesting that we expect the autistic person will achieve anything less than their true potential.