To DX or Not To DX?

Back to my Am I or Ain’t I? post. With a few further thoughts.

After reading that post a dear online friend suggested that I should take the online Aspie Quiz. While it is NOT a diagnostic tool, it might at least give me an idea. One way or the other.

Well, I did take it. And the results were clear as mud!
Your neurodiverse (Aspie) score: 110 of 200
Your neurotypical (non-autistic) score: 99 of 200
You seem to have both neurodiverse and neurotypical traits

And this graph?


Where is the legend even? Does an 8 mean more neurotypical and a 2 more neurodiverse? Or is it the reverse? Or are higher scores mean more for both? Even the detailed report was not that helpful.

Mind you, I had taken a few different online quizzes when this idea came up a few months ago. So I went looking for those results…and found this…

Your neurodiverse (Aspie) score: 135 of 200
Your neurotypical (non-autistic) score: 71 of 200
You are very likely neurodiverse (Aspie)

Yes…EXACT same instrument…taken a couple of months apart. Markedly different results? And those are self-tests. What happened? How can that be?

Very simply…my mind was in a different place. I have not had the chance to compare side by side the details question by question. But with these things there are always THOSE questions. The ones that stump you. The ones without a clear answer. You sit there and ponder them…and then go with the one that fits best…AT THAT TIME.

Clearly this is what happened.

BUT the whole thing highlights the dilemma with the whole diagnosis issue…

It is not OBJECTIVE.

And while the experts might point this out as the problem with SELF-DIAGNOSIS, I believe it is as bad…or even worse with professionals.

Two…or three…or more doctors, psychologists, counsellors, etc…can look at the same person…even using the measures…and there are several different ‘tests’ for autism…and come to different conclusions.

What is more…in the UK system…without easy access to second opinions…once you are told that it is not autism, it is very hard to get anyone to listen to you again. The whole system is a quagmire of us against them…parents versus professionals. And too often their voice rules.

Even back home in the US…the cost in $$$ of diagnosis can break a family.

But if schools are involved…you have no choice. Without a diagnosis you have no hope of getting the support that your little human needs. Even with one…you are not likely to get the support that your little human needs as an individual…but rather a one-size fits all ‘autism’ package.

And if you are an adult like me…forget it. Diagnosis is the end of the line. The only help out there is mental health…and woefully little of that…and certainly not designed to meet the unique needs of the neurodivergent. Besides…autism/neurodivergent is NOT in itself a mental health condition.

Oh, certainly, it can come with a plethora of them…anxiety, depression, PTSD to name just a few. But those are not as much co-morbidities of the autism as they are the result of living a life time without the understanding and support that you need. Always being on the outside looking in.

So what do you do? What is the answer?

As a parent…you learn to trust your gut. To parent your child as a unique individual. My older offspring had this thing when they were in their teens…Mommy, who do you love the most? It was a running family joke. But my answer was and remains the same…I love you all the same AND different. When you treat your child not as a checklist of milestones to be made, or test scores to be achieved, or any other random ‘averages’ but as a unique individual with gifts and challenges unlike any other…then you don’t need a label.

Of course, the rub becomes…schools. Or at least today’s schools. And there seems to be a decided lack of will among the education system and politicians to actually address the needs of the individual. In my lifetime, I have watched this process. And while I feel deeply for the little humans stuck in it, no system is easily changed. And that is not my voice. I would remind parents that whether you #HomeEducate your little human or delegate it to the school…that in the UK Section 7 of the Education Act 1996 states that:

The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable—

(1) to his age, ability and aptitude, and

(2) to any special educational needs he may have,

either by regular attendance at school or otherwise.

In other words…YOU the PARENT are still ultimately responsible for your little human receiving SUITABLE education.

If one school won’t or can’t then you need to change schools or #HomeEd. It is not just your right but your RESPONSIBILITY.

But what about as an ADULT? What do you do then?

Like I said…even IF you pursue the diagnosis route…you are unlikely to receive any meaningful support. Other than from the #ActuallyAutistic and #Neurodivergent communities.

The truth is that those communities are strong online…and getting stronger. They stopped a fundraising stunt sponsored by a major retail change because it was disrespectful to the #autistic. Their voices are being slowly being heard by the television, movie, and publishing industries through critiques and boycotts.

But we need to take it further. If there are no mental health support structures in place…then we need to create our own. Support groups…whether the controversial AA model or the NCT which has transformed from a natural birth training organization to a powerhouse of support and lobbying for new parents.

The sad truth is that even the support which is available is too often not appropriate. It is years out of date, based upon misinformation and #AutismMyths, and not fit for purpose. The psychologists, psychiatrists, and counsellors do not understanding the neurodivergent. Even with a sudden influx of funding…which is not likely…it would take at least a decade to change the medical model…or more. And during that time more #ActuallyAutistic are dying by suicide.

It is time that we all…parents, #ActuallyAutistic, and the #neurodivergent…realize that…

No One is COMING…

But that we are better suited to help ourselves and others than the professionals are now or would be for decades. We can save ourselves…and one another. Not only may it be the only way…it is in fact the BEST one as well.

After all…WHO knows autism and #neurodivergence better?

Certainly not the ‘experts’.


One response to “To DX or Not To DX?”

  1. I love this post, very true.

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