Once again, the discussion of Autistic adults was neglected.

Autism, is once again, in the public eye, and it’s not even April. And no I’m not just talking about fidget cubes and fidget spinners. No this time it is all about diagnosis. Well it was, this week on one of our national Television stations. It was not, I was pleasantly surprised by this, a terrible program.

The program Insight, was on diagnosing autism. Which is, in Australia a topical discussion as the rollout of the National Disability Insurance Scheme continues to roll out across the country. In the wake of the NDIS discovering the size of their autistic client base, and the discovery of a lack of national standardised practice in the method and mode of diagnosing autism across the country.

The show highlighted well, many of the issues of how differently autism is diagnosed across the country, how in some states it must involve a panel of clinicians and others a single doctor can make the call.

The participants in the program effectively communicated the difficulties in the process, the difficulties when a family moves from one state jurisdiction to another jurisdiction.

Discussion of how difficult it can be to obtain a diagnosis, especially for girls was thoughtful, and at times, heart wrenching.

Of course the question of prevalence, over diagnosis, and misdiagnosis were passionate parts of the discussion. Over all I would compliment Insight on an overall well done discussion in terms of diagnosing Autism in children.

There were two autistics given a voice, a small voice, but a voice of sorts. A young autistic man closed the show off with a compelling speech of how we as autistics are not broken, sick, diseased and in need of cure. We are different, we are not problems, there’s not something wrong with us, but, it’s the rest of you that need to catch up with us.

The show was entitled diagnosis Autism, and so it really was beyond the scope to talk about support, accomodation, life options and so on for autistic people. It would be wonderful to see Insight do a show on some of those issues. It would be a well needed conversation that could be had on a national stage.

However, having said all of that, notably absent, yet again, in a conversation about autism, was the question of diagnosis for adults. The rise in prevalence of autism numbers in this country is not all that more kids are being diagnosed, but also, that as those kids are diagnosed, that their parents recognise that they might just be autistic too.

I suppose, what happens, is we, see ourselves in the things our kids are experiencing, in how they explain their world and so on. The question of our own neurology and if perhaps we might be autistic ourselves, starts to burn within us.

For many of us, little was known about autism, other than the specialists in the field, when we were kids. The diagnosis just wasn’t there for us. And in many ways, it still isn’t. Well, it’s there, but it’s as if it is unattainable.

For adults to obtain a diagnosis in Australia, there is no standard method, there is few places to turn for information within the establishment of clinicians and diagnosticians. We turn instead to that ubiquitous monster of information, both reputable and not reputable, known as the internet.

We read blogs, we join forums, we take online tests. We learn what is true and we often stop there and identify as Autistic. No we may not have the piece of paper, but for many this is either enough for us, or, it’s all we have the means to access.

Personally, I got to this point, and felt it wasn’t enough. I like to know for sure, I needed confirmation. I went looking for an official diagnosis.

I learned very quickly that services to diagnose adults are few and far between and the ones that are out there are expensive.

My journey to an official diagnosis began with a call to my state autism peak body. They were able to offer virtually no assistance at all. They did email me a list of psychologists that diagnosed autism. Many of them did not work with adults. There was no guidance on which might be helpful or what the costs might be.

I was fortunate though, the psychologist involved in my youngest daughters diagnosis was someone I felt comfortable enough to talk to. I kind of came out to her about being pretty convinced that I too was autistic. She showed non surprise at this information, and was caring and helpful.

She didn’t have experience in diagnosing adults, but she was able to put me in contact with another psychologist who was.

Actually obtaining that diagnosis was, though, an expensive process. In a country with a universal health care system, obtaining a diagnosis for an adult has zero financial assistance. There are no rebates, no bulk billing, no insurance to cover it.

The process of diagnosis is not a quick ten minute appointment either, it is a multi-visit, prolonged process involving a battery of assessment instruments. It’s also an utterly exhausting process.

The cost in this country for an adult to gain an official diagnosis is in the range of around $1000. It’s not cheap by any stretch of the imagination.

Add to that, that, the employment rate for Autistic adults is 40%, and that’s not necessarily full time employment, it could be as little as 5 or 6 hours a week of casual work.

Add to that, that many adults seeking diagnosis are already financially stressed in providing the support and services their already diagnosed children require.

And that, readers, I believe, is the elephant in the room. As autism has caught the national interest, the worldwide interest, the conversation continues to centre around young children, and occasionally young adults. Neglected and ignored are the cohort of adults who never had a name for what it was that made them different to others, and mark my words, we always knew we were different.

Obviously it is critical to provide services for children and young adults who are autistic. It’s important, we want the very best for these human persons. It’s good and right and proper that we do everything we can to promote the best life outcomes for all children.

The question, I have seen asked a little bit, is what about when kids age out. This is a pertinent question, and we are seeing some programs rise up to answer this question.

The question that is not being asked on the national and international arena of autism though, is, what about all those that have already aged out of the system.

We have had to work very hard to try and fit in, to try and do what we were meant to do. We have done it without supports, without accomodation, and certainly without understanding and acceptance. Some of us have done a pretty great job of it and managed to be somewhat successful. Many of us have not. The employment rates show this up clearly for all to see.

There are more than a few of us that for quite some time, looked like we were doing well, and in a sense we were. Unfortunately the exhaustion catches up, the pretence of playing at being neurotypical becomes too much and we lurch into meltdown, shutdown and burnout.

A key theme in the program, was that in the impact of diagnosis is the allocating of supports and accomodations. Without diagnosis these supports remain unattainable.

The question then, of course, is, if diagnosis for children leads to support for them to be the best they can be, wouldn’t it then be the same for the diagnosis of adults.

It seems, that, in the national conversation about diagnosis, that we who have aged out have again, yet again, been forgotten at best, or is it more insidious and we have been deliberately ignored.

It could seem a bit narcissistic of course, a bit, what about me and all, but it’s a genuine question.

What about those who’ve already aged out of the system? What are we going to do for them? How can we help them live the best lives they can? How can we accomodate, support, and assist them to be active, productive and contributors to society?

And of course, why aren’t we listening to them more closely and heeding what we can learn?