America and Autism...?

[AngelaS267]

Hey there, it's me again... So I'm noticing something here. I am American, Black American to be exact, and I found out I was autistic super late in my life. I went through elementary school, middle school, high school, college, without knowing I was autistic. After finding out that I was, I find it a little shocking that more people didn't.... know that I was autistic? After having this discovery, it seems painfully clear that I am on the spectrum. But I don't see a lot of public discussion or awareness of having Aspergers at all. I feel like if I were to let people know that I was, they wouldn't understand what I mean... Or maybe label me a hypochondriac, or say that I'm being extra perhaps. I notice in Europe, they have a lot more open dialogue about being on the spectrum, but in America... If you're talking about autism, your talking about someone who is non-verbal, extreme stimming, a savant, just the most extreme cases. Also, my sister and I are the only other black autistic people I know... It seems strangely taboo in America because it doesn't feel like there is even remotely enough resources for adults with autism or public understanding. I don't even know what I'm trying to get at... Maybe if you're from Europe, how do you think people deal with your autism? Do you think there is a general understanding of Aspergers or Autism? Or is it just as bad there as it is here in America? Do you get help for it at school? Is there help for adults? Or hell, if you're from anywhere else that isn't America, how do you think your country handles Autism as a whole?

 

[Rasputin]

Hey there, it's me again... So I'm noticing something here. I am American, Black American to be exact, and I found out I was autistic super late in my life. I went through elementary school, middle school, high school, college, without knowing I was autistic. After finding out that I was, I find it a little shocking that more people didn't.... know that I was autistic? After having this discovery, it seems painfully clear that I am on the spectrum. But I don't see a lot of public discussion or awareness of having Aspergers at all. I feel like if I were to let people know that I was, they wouldn't understand what I mean... Or maybe label me a hypochondriac, or say that I'm being extra perhaps. I notice in Europe, they have a lot more open dialogue about being on the spectrum, but in America... If you're talking about autism, your talking about someone who is non-verbal, extreme stimming, a savant, just the most extreme cases. Also, my sister and I are the only other black autistic people I know... It seems strangely taboo in America because it doesn't feel like there is even remotely enough resources for adults with autism or public understanding. I don't even know what I'm trying to get at... Maybe if you're from Europe, how do you think people deal with your autism? Do you think there is a general understanding of Aspergers or Autism? Or is it just as bad there as it is here in America? Do you get help for it at school? Is there help for adults? Or hell, if you're from anywhere else that isn't America, how do you think your country handles Autism as a whole?

Angela, I know exactly what you are saying. You see all kinds of autism awareness ads advocating support for autistic children. For the most part adult autism is ignored or hidden in America.

I was diagnosed with ASD-1 in January. Like you, I went through school, and college, and had been continuously employed for 35 years, without anyone knowing I was autistic.

 

[Crossbreed]

@AngelaS267 ,

Check out Autlanders, Thriving Outside of the Box: Finding Support Resources in the USA...

 

[Shamar]

Hey there, it's me again... So I'm noticing something here. I am American, Black American to be exact, and I found out I was autistic super late in my life. I went through elementary school, middle school, high school, college, without knowing I was autistic. After finding out that I was, I find it a little shocking that more people didn't.... know that I was autistic? After having this discovery, it seems painfully clear that I am on the spectrum. But I don't see a lot of public discussion or awareness of having Aspergers at all. I feel like if I were to let people know that I was, they wouldn't understand what I mean... Or maybe label me a hypochondriac, or say that I'm being extra perhaps. I notice in Europe, they have a lot more open dialogue about being on the spectrum, but in America... If you're talking about autism, your talking about someone who is non-verbal, extreme stimming, a savant, just the most extreme cases. Also, my sister and I are the only other black autistic people I know... It seems strangely taboo in America because it doesn't feel like there is even remotely enough resources for adults with autism or public understanding. I don't even know what I'm trying to get at... Maybe if you're from Europe, how do you think people deal with your autism? Do you think there is a general understanding of Aspergers or Autism? Or is it just as bad there as it is here in America? Do you get help for it at school? Is there help for adults? Or hell, if you're from anywhere else that isn't America, how do you think your country handles Autism as a whole?

What you are saying is not the least bit unusual. Over here (I can't speak for other countries) only the extreme cases get noticed. If a student is not causing problems in class, even if something is obviously wrong, no help will be given. In my case, I was not diagnosed until age 60, despite having seen at least a dozen psychiatrists, psychologists, counselors, and therapists, and giving them a list of problems that read like the autism diagnostic criteria. And none of them (all allegedly experts or trained for this sort of thing) caught on or even suspected. If you are an adult with autism, you are expected to deal with it yourself. Don't forget that the biggest autism advocacy organization in America believes we should all be locked up until a "cure" is found.

If it helps any, there was a young black lady member (an artist, if I remember correctly), but I don't believe I have seen her here for at least a year. So, at least technically, you are not alone.

 

[Thinx]

I think the picture is similar in the UK for adults, but improving in schools levels of awareness. There's not much awareness of the fact that children with autism may have parents with autism, or that adults with ASD1 have any support needs.

Most people wouldn't use the term ASD 1 or know what it means. Most counsellors wouldn't recognise it, or know how to help. Most people react to disclosure of ASD 1 with ignorance and assumptions based on watching Rainman.

 

[Progster]

I'm from the UK, but live in a different country in Southern Europe and the first point I want to make is that Europe is made of many smaller independent countries (the European Union creates laws or directives to regulate the common marketplace, but social welfare is largely determined on a national level) all with their own culture, norms, laws and ways of dealing things, so when talking about Europe we really need to define which specific country we're talking about. Some countries have better autism awareness than others. In the UK there is greater awareness and better support (especially for children) than many counties in Eastern or Southern Europe. In Greece, there is very little public awareness or support for autistic people, especially outside of the capital. People have heard of autism, but are unaware of the spectrum of traits. If a child has a speech delay or extreme behaviour, sure they'll notice, but a child with fewer extreme traits, or Asperger-like traits, particularly females, may go under the radar or be misdiagnosed. I once spoke to a school teacher here, and he told me that he is aware that some of his students have learning difficulties, ADHD or autism, he recognises these traits in them, but the parents often don't want to acknowledge them and so they don't get diagnosed, there is no or little support at the mainstream school so he just has to cope and manage them in the best way he can without support.

 

[Alexej]

Thank you @AngelaS267 for the question

It made me realise that a Forum is colour blind - something I had not been aware of before consciously.

 

[menander]

I think it has to do with health care. Services now go mostly to those who are low functioning. I do believe they scrapped Asperger's and it's "now under the umbrella of Autism." That is how it is supposed to go, but it's not really. I know a lot of Asperger's folk who have no resources and can't get the diagnosis of autism. It has to be pretty pronounced. I could be wrong.

 

[clg114]

When I was 62, I was diagnosed with Asperger's Syndrome using the criteria from the DSM-4. I am from the north-western US. Here, most people can not or will not understand what ASD is. If they find out that you are autistic, some of the things that that they think are wild. You could hear "So, you are retarded." or "You don't look autistic." Much, much more education is needed on ASD. However, I believe most will never understand. Consequently, I very rarely tell anyone that I am autistic. Need to know basis only.

 

[clg114]

I think it has to do with health care. Services now go mostly to those who are low functioning. I do believe they scrapped Asperger's and it's "now under the umbrella of Autism." That is how it is supposed to go, but it's not really. I know a lot of Asperger's folk who have no resources and can't get the diagnosis of autism. It has to be pretty pronounced. I could be wrong.

In 2013, the DSM-4 was replaced with the DSM-5. The diagnosis of "Asperger's Syndrome" was discontinued in the criteria for DSM-5. Those with a AS diagnosis should be ASD-level one now. However, it is much harder to get a diagnosis with the DSM-5. I believe that the reasons for this are for economic change, rather than what is best for the patient.

 

[Pats]

I think the U.S. is not as well educated about autism. I was 59 when I learned about my autism - main reason being lack of knowledge and education. Most Americans still see autism as the stereotyped autism and don't understand the high functioning at all. Maybe the next generation will do better.

 

[ZebraAutismo]

I’m in the UK (honestly not sure if we’re still in Europe. I think the UK is getting better about autism but I know from communicating with a German autistic their having an awful time because of the countries lack of acceptance of a whole so I don’t think the whole of Europe is accepting.

I think generally people in the UK are getting more accepting of people who are different although we still have a long way to go. An autistic person I know said America was a difficult place to be autistic so I don’t know.

 

[SimplyWandering]

I live in the USA and most insurance companies do not cover Autism diagnoses.

To get clinically tested can cost 1000s of dollars. You need that testing to help get assistance in whatever diagnosis, treatments of disorders/underlying issues associated with autism that you or your child have.

It's only in the last 15 years that autism has really changed and been accepted In the USA.

For years people only noticed those who are "low functioning," or Savants (such as depicted in the movie "Rainman.") ,
but now they see there is a whole spectrum with different needs. To these organizations the most important aspect is that issues are treated when Autistics are young.

It seems like health organizations consider an adult as a lost cause... so why bother IMHO.

As for Autstics of Color , ethnic backgrounds (I am a White Latino) , and/or women they often are marginalized as they don't make up the larger population of autistics. Autism doesn't discriminate, but people do.

There are networks like Spark online for children and adults of all background. Google Spark for Autism , check it out, they often do Autism studies as well.

 

[Pats]

Hi Angela, again. I was brief yesterday because I was interrupted. There are lots of autism advocates today and places trying to educate America. There are more and more individuals learning that they are autistic. I think there will always be a problem, even with more education about autism. Reason I feel like that is because we're trying to educate narrow minded people along with the open minded. People tend to be selfish in wanting things their way and not interested in what it might mean for others. Look at what's happening with the isolation and corona virus. Should be simple, but Holy Cow!!! There are extremes going both directions and then those who don't give a flip and just do what they want, So take something more complicated, like autism, you're going to get all kinds of different reactions because there's all kinds of different people. I'm older so I care less about how people see me. I am more open about my autism mostly to educate those around me. I'm kind of telling my community "yes, I'm weird. Here's why. And there are lots of others out there similar to me that maybe you should care a little more about". Look how long it has taken for people to become more accepting of the physical handicapped - thousands of years. And those are visible, so to get them to be more compassionate on something not visible is going to take a lot of teaching.
Anyway, I hope you find a home here, it's a friendly place to be.

 

[Luminous]

I am American, Black American to be exact, and I found out I was autistic super late in my life.

Pleasure to meet you Angela. I too am an Autistic Person of Color. I present as Black, but I am mixed. I have been thinking a lot about how the black community sees (or doesn't see) autism. I think there are benefits to our culture that can be helpful when it comes to neurodivergent people - however I believe there are aspects of our identity having to do with how we experience the world outside of autism that can sometimes complicate our autism further.

I have lived in California, Hawaii, and now North Carolina. They have all shaped my experience as a black woman very differently. My late-in-life diagnosis makes me think about how women are treated differently, people of color are treated differently, and people who are neurodivergent are treated differently - and how the intersection of those three can feel very *unique*. Northern California is generally pretty "politically correct" so I feel lucky to have been able to see examples of that sort of representation but there is still room to grow for sure. America as a whole I feel has a LOT of catching up to do - not just access to resources and support, but also of our greater cultural mindsets. I want to be part of a community who gets me - but that's rare even as a neurotypical person. All the best!

 

[Kevin L.]

I am an autistic American, and I was diagnosed late in life . . . and I actually wrote a short book about it called Field Notes of an Autistic Paramedic.

Part of the problem (my belief, and not something I present as a fact) is that autistic people are socially impaired, and--because we are socially impaired--we have difficulty advocating for ourselves, and we have difficulty forming and participating in an advocacy group.

This point is reinforced by the fact that only about 16% of us are meaningfully employed, as employers want someone whom is a "team player."

There is also the idea (which I've heard from employers, family members, friends, and so forth) that high-functioning autism is an excuse to escape the consequences of "bad" behavior.

As an example, autistic people often have an obsessive, all-consuming special interest.

I've been told that if I make normalcy my special interest, then I would be normal. So, I'm autistic because I don't give normalcy the same level of interest that I devote to my writing or my stamp collection.

Or . . . if I'm smart enough to know everything about trains (I had a train obsession when I was younger), then I'm smart enough how to figure out how to "not be autistic," and make my autism "everybody else's problem."

These issues seem--to me--to be an aspect of why Americans seem so disliked in the world. I'll digress for a moment, but please stay with me as I show how my points are relevant.

Keep in mind that we make up about 5% of the world's population, yet we produce about 35% of the world's greenhouse gases. So, in order to bring the rest of the world up to an American standard of living, we would require 4 more planets like planet Earth.

This means that Americans are considered to be provincial and spoiled by the rest of the world, as our material wealth has enabled us--by some criteria--to be shallow and uncaring, as we don't appreciate what we have because we didn't have to struggle for it.

With these ideas as a preamble, these attitudes are reflected in how we Americans treat autistic people . . . whom are--esentially--foreigners in thier own country (because of the social impairments).