Socioeconomic barriers to an Autism diagnosis

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It can take an extra decade of life and fighting against a rigged system, to get a diagnosis in socioeconomically deprived areas of the United Kingdom.

The next hurdle after that is being bullied by Autistic folk for not disclosing your Autism diagnosis, unfortunately - for some folk.

P.S, I realise this article focusses on the U.S state of things regarding Autism diagnosis - but most people are from the U.S on this forum, so it makes sense to post content relevant to the the U.S.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4442731/

Information about autism from scientific studies is coming in faster than it can be shared and learned , and most doctors don't keep up with it. Most doctors in practice today have learned old standards about autism and don't realize that what was "true" in the 1980s and 1990s is not true today. Unless the diagnosing doctors are specialists in autism (and in adult autism) with that as their primary practice, mistaken diagnoses are not only possible but likely. There are definitely socioeconomic barriers to getting medical care of any sort in the USA, in autism, there are such a limited quantity of specialists with up to date knowledge and experience, that it is truly a struggle for almost any adult to find diagnosis in the USA. this is changing, but not fast enough... thanks for this post.

I personally think Autism is under-diagnosed, not over-diagnosed. I think you were trying to say that somewhere in your post?

Who, in the autistic community, has been bullying autistic folk for not disclosing their diagnosis???

The nearest thing to such "bullying" that I have encountered is the fact that some autistic adult support groups and autistic rights activist groups use Facebook as their sole or main point of public contact. This is a problem due to Facebook's "real names" policy.

However, among the autistic people I've known, it is generally accepted that it is up to the individual to decide whether, and if so when and with whom, to disclose. At least this is accepted in theory, though some may fail to live up to it in practice (e.g. by limiting their outreach to Facebook).

If you've encountered such bullying, I'm very sorry to hear that. I would be interested to hear more about it, if you feel comfortable discussing it.

Oh, it is usually not explicit bullying or discrimination - but indirect discrimination & victimization, i.e, a lot of Autistic guys get targeted by biological females for social attack because they are politically undesirable to them. It can cause great mental health damage to those on the receiving end.

I was lucky to even be diagnosed in childhood but it was just a fortunate I was in the right bad situation and saw the right doctor and right therapist. I actually give my school credit for it because if it weren't for them, I wouldn't have been diagnosed. I don't think my mom would have taken the diagnoses either if it weren't for the situation we were in. To her autism was a stigma and a death sentence. To her Asperger's meant being a genius and so brilliant but with weak social skills.

I also think the psychiatrist I saw was ahead of its time for autism. There were not many of him around but sadly he retired in 2001 and I am not sure if he would be alive. He would probably be in his 80s now if alive.

I was diagnosed late because of being deprived socioeconomically from birth, leaving me vulnerable to "oh, but you are not Autistic because you are good at socially masking."

My situation was the same - both my parents saw it as a death sentence, believing I was committing a suicide of some sorts by seeking a diagnosis. I had to resist that type of thinking for endless years. You quickly recognise propaganda when you are put through those circumstances.

The people you are dying to be on the side of don't even recognise who you are either most of the time. It's kind of like screaming "I AM YOUR FRIEND" in their faces, only for them to repeatedly punch you in a figurative torture chamber for a decade.

Then you are released and they consider that maybe, maybe you are their friend.

My ASD cost something like $2500, and my ADHD about $2000. Putting them on insurance would mean I had no coverage for trauma therapy / psychotherapy for the entire year (therapy is $255 / hour).

So I definitely see your point about socioeconomic.

"I personally think Autism is under-diagnosed, not over-diagnosed. I think you were trying to say that somewhere in your post?"

Yes, autism is under diagnosed, especially among adults who grew up before autism was listed in the DSM. There are about 5million 5 hundred autistic adults in the usa today alone, and I suspect the vast majority of them have no idea they are autistic. Proper diagnosis is simply not readily available in most places.

I was diagnosed late in life.  Asperger's Syndrome did not appear in the DSM until 1994, when I was only 34 years old.  This was the primary barrier, because as a child, being physically clumsy, socially awkward, and a "little professor" only made me a target of ridicule and contempt.  Meltdowns earned a back-handed slap or The Belt.  Sensory overload made me anxious and caused loss of sleep.  There were other issues as well.

I was speaking with one of my son's behavioral psychology professors at my son's graduation.  She looked a t me funny, asked a few questions, and then asked if I had ever heard of Hans Asperger.  She gave me an interim diagnosis (AS) right on the spot.  I later received an official diagnosis (PDD/NOS+PTSD) from three of her colleagues, and paid about $400 out-of-pocket.

There were no socio-economic barriers involved for me; only a previous lack of contact with an appropriately-trained an licensed mental-health professional.  Since then, everything has "fallen into place" and my experiences have made more sense.

I only wish I could have told my father before he passed away.

This is a very relevant topic. The only reason I received a diagnosis was because someone in my city had donated a one-off significant sum of money which allowed people that were awaiting for a dignosis to get access to one. It was an academic in our area who secured funding from the NHS social care trust. The only other way would've been to get a diagnosis through a private doctor which would've been unaffordable.

Even if that is Facebook's policy, there was absolutely nothing to stop me opening up a second account under a pseudonym recently. It was very easy to do, and there were no checks or evidence of anything required. I just needed a new email address and a new name and the job was done.

I didn't want to join and post in all the Autism groups and pages under my real name, where the privacy settings would have forced me to inadvertently out myself to family, friends, and work colleagues, when I haven't yet decided if that is a step I think would be wise to take or not.

The United States is a lot more advanced in terms of its medical diagnostic crtierias for everything pretty much. Where there is money concerned, there is more funding, when there is more funding, there is more research. More research equals better screening processes.

Unfortunately, I had to try three times on the NHS to get my diagnosis and it took 9 years to get my diagnosis.

God love the NHS.

I think national ID should be a required thing for a social media account. There are too many fake people pretending to be something they are not, and who try to bring other people down to their level.

If people want to be anonymous - there are always web forums.