Help with Aspergers Diagnosis

Post Reply New Topic

Maybe this is a generational thing. But, I personally am OK with "diagnose based on the observations" from the outside (by someone who is NT or otherwise). I have become convinced (based upon others, who know better than me) that it is quite difficult for an individual to do this observation from the outside (no matter how well that individual knows himself/herself from the inside).


I am not altogether certain what this "Autistic community" is. I certainly don’t consider myself a member of it. And, certainly wouldn’t want it to define me.

I agree with your thoughts here, Rocket.

Based on reading many posts about the diagnostic process here and elsewhere since 2013 your experience is atypical and what Girl_Kitten writes about is much more common. I do think location makes a huge difference in this regard. In the UK while the long wait is a huge problem, there seems to be a far greater understanding of Autism and the Autism Spectrum among professionals then in America. But even in America understanding varies greatly.

The UK is the place that produced Tony Attwood, Uta Frith, Lorna Wing, and Simon-Baron-Cohen. The UK has always had that "eccentric" part of the culture that has produced innovative music, comedy, theater.

American attitudes towered autism started with Leo Kanner and Bruno Bettelheim and continues with Autism Speaks

I agree completely. Even if I'm not autistic I've found out so, so much about myself from all these outside views. Really are beneficial.

Well, I guess wrongplanet is an autistic community, right?

Well, WP is certainly a community which includes autistic people. But, there are other autistic communities as well.

So, is the autistic community a collection of all these sub-communities? And, who is in charge or minimally who is the spokesperson? Most certainly, I would never consider myself part of any community or want them representing my interests or beliefs, without knowing who the leadership of that community is, who the other members are and what the organization stand for.

Heck, (with no offense to Alex), I wouldn’t want WP representing my interests or beliefs. There are simply too many nut cases (myself included), crazies (myself included) and trolls for my liking. LOL

Again, thanks for all the replies.

Regarding diagnosis - even as a NT, I think I understand the issues here. Having suffered from depression/anxiety myself in the past I know that self-diagnosis can drive one crazy, and lead down many false pathways. At the same time I also realise that you don't need a "label" to move forward with, any more than you need a marriage license to have sex.

My friend and I are going to work on the basis that she probably is an aspie, and try and find resources (musingsofanaspie appears very good here) that allow us to understand the other better. If after a while, it looks like this doesn't work, or too many things don't quite fit, then we'll stop approaching it this way.

That does seem pretty sensible. Even if she's not, she may have tendencies and researching it may help you understand each other better. It's exactly what my mum is doing, actually.

I was 61 when my step mother suggested I had it. She'd watched some shows about it. I was glad to find something that explained my life so well. I became so certain I had it that she had to suggest I should get a diagnosis. I did so and haven't regretted it. Another thing, if she has it nothing would be 'wrong' with her that isn't already 'wrong'. It give one a chance to stop blaming themselves for what to us is normal. It also gives an opportunity to improve her life the best she can.

Yes, your experience is out of the ordinary, especially for Americans. There are two issues here- access to diagnosis, and gender-based pressures and discipline.

To begin with access to care, you have single-payer health care. We do not. This affects diagnosis of autism by limiting the channels of diagnosis. In the US, children can be diagnosed by a school psychiatrist for free or diagnosed by a private psychiatrist. High-deductable health insurance is commonplace in the US meaning that individuals and families pay for the first $1,000 to 10,000 of medical care for the year before the health insurance company begins paying. Even for people who have great health insurance, most child psychologists don't take health insurance. It often costs several thousands of dollars to even get an autistic diagnosis though a private psychiatrist, which many American families struggle to afford.

American schools are strapped for cash. An entire school district in Kansas released children early for summer this year because they couldn't afford to stay open for the remainder of the school year. Many schools do not have a psychiatrist on staff to diagnose children, and for those schools that do, psychiatric services are a finite quantity. As such, it's often only the "disruptive" children who receive services or children whose parents are really pushing hard for services. For autistic children who are struggling with sensory overload, struggling socially, struggling with verbal directions and speech but not failing academically, why would schools want to spend their incredibly limited budget and psychiatric resources on these kids who aren't a problem? Answer: they dont.

There is also an issue of knowledge. There is no meeting or committee to diagnose people as autistic; again, it's generally difficult for Americans to afford ONE person to make a diagnosis, let alone a bunch of people to all weigh in. Assuming you have access to someone who can diagnose autism, there is a variance in how knowledgeable that person will be. The UK is a small, densely-populated country. In the US, many people live in rural, uneducated places. I had a rib out of place due to bulimia for six years because one doctor I went to wanted me to have an EKG (which was fine) and the second opinion that I got insisted my chest pain must be heart burn. Outside of common illnesses and the classic ways that those illnesses present, medical providers in rural areas do not have the specialized knowledge to do a complete and through differential diagnosis and notice when an illness is not a common illness or does not have a common presentation.

Before 1990-2000, very few pediatricians and psychiatrists knew what Autism was. Most Autistic adults who grew up before that time were not diagnosed because no one knew why they were so "weird". Those who were diagnosed were often diagnosed as "mentally ret*d" because of language delays. Those "weird" adults who have been living their entire life as undiagnosed Autistics would have to pay about $3k to be diagnosed because health insurance companies don't generally pay for autistic diagnosis of adults. Once you are diagnosed, accommodations are limited. I'd rather spend the $3k on soundproof headphones and pay for parking so I don't have to take loud, crowded public transportation as even with a dignosis, I would not get headphones or parking paid for by my insurance company or anyone else.

Additionally, many health care providers were educated years ago, and the "default" body in the medical community remains the man. In the same way that my doctors didn't know very much at all about the physical illnesses associated with bulimia, many psychiatrists are not well-educated about how Autism appears in girls. Girls and boys are treated differently from birth and even have different language centers of the brain. Of course there are differences in how Autistic girls and boys appear, and a psychiatrist who is not educated about such differences will overlook many girls.

Just because you appear classically Autistic as a girl does not mean that all girls do. In addition to the organic differences between boys and girls, boys and girls are also disciplined very differently. In a country like the US where the attitude is that all ills can be solves through proper discipline, different discipline based on gender can make a tremendous difference in whether girls and boys are showing signs of Autism. When I was little, I was taught that not making eye contact and not responding when someone speaks to you is rude. I was punished for both. I make eye contact even though I don't like it. I respond to everyone verbally even though I don't like it. It's what I was taught to do. Boys often do not have the same social demands placed on them because "boys will be boys" but girls are expected to be friendly, smiley, and social. It is not out of the ordinary in the US for total strangers to tell even grown NT women to smile. These attitudes are even more prevalent in rural communities, creating the perfect storm of girls who have their most obvious Autistic traits disciplined to show very little and health care providers who are not educated well enough to notice the more subtle Autistic traits in girls.

So, yes, we as Autistic adults can require other Autistics pay several thousands of dollars to get a diagnosis from someone who may or may not be knowledgeable about how Autistic girls and adults appear and how traits can be quieted through discipline but it doesn't change how someone feels inside. That's kind of a crappy way to treat people who have been rejected by NTs as being "weird" and "rude" their entire lives. For me, once I (obsessively) started reading about what it feels like to be Autistic, it was obvious to me that I am not babyish, weird, rude, fidgety, picky, irresponsible, forgetful or all of the other things I have been called in my life. I am just Autistic. I trust others' knowledge of themselves and their experiences, and I think that if the NTs have rejected someone for being "weird" I don't think we as the Autistic people who make up a minority group (the Autistic community) should further their pain by rejecting them, too.

This is an article that was on the front page of the Washington Post this morning where many Autistics diagnosed in adulthood speak about their experiences, including a mention of the expense of diagnosis in adulthood.

"Because receiving a formal diagnosis as an adult can involve an expensive battery of tests not covered by health insurance, many autistic people who do not need to qualify for special services ­self-diagnose using information they find online and other places."

http://www.washingtonpost.com/politics/ ... story.html

But I don't. I'm definitely not classically autistic, I had no speech delay and got through the regular school system fine. If I am autistic I'm no doubt high functioning. Not sure what made you think that.

I read "obviously autistic" in this context to mean "classically Autistic". If you are "obviously autistic" without displaying classic signs, then again, you are privileged enough to have medical care providers since childhood who are specialized and educated about less common signs of Autism. Access to basic healthcare and diagnosis is an issue in the US, let alone access to health care providers who are specially educated enough to recognize newly identified, less common signs of a disability.

Additionally, if you got through the school system fine, had you grown up in the US, your public school would not have been wanting to expend resources to diagnose you as Autistic (and then have to pay for your IEP and accommodations). Your diagnosis from a private psychiatrist would have cost thousands of dollars for your parents, and many American families do not have the extra money for that, especially if you are doing fine in school and don't have verbal delays.

Then why am I an adult without a diagnosis? Surely if your logic was correct, every single british kid would have been found autistic at age 2. But it's not the case. Not for me, not for many other people. It took me being in hospital with a pretty severe injury to myself (self-inflicted) for this to even start. Hate to burst your bubble but it's not perfect here and it's incredibly slow and because it's free the NHS isn't making any money out of it so they will try to avoid sending people along this track since they have very poor funding and it's expensive so many people actually have to go private and pay the same amount of money you would in the US.

So then why are you arguing that everyone needs to go through this "not perfect", "incredibly slow", "poor[ly] fund[ed]", "expensive" system before they can use the word "Autistic" to explain themselves and their unusual behaviors? Why should I have to go through this "not perfect", "incredibly slow", "poor[ly] fund[ed]", "expensive" system before identifying myself as Autistic to a waiter at a restaurant to ask for a quieter table? Why should I have to go through this "not perfect", "incredibly slow", "poor[ly] fund[ed]", "expensive" system before explaining to a friend that I can't eat the meal that they've prepared because I am Autistic and have sensory limitations with food? Why should I have to go through this "not perfect", "incredibly slow", "poor[ly] fund[ed]", "expensive" system before I can explain to strangers who see me running my fingers on my security blankets that I am doing so because I am Autistic? Why should I have to go through this "not perfect", "incredibly slow", "poor[ly] fund[ed]", "expensive" system before I can seek out others like me who are also Autistic?

If the system is so "not perfect", "incredibly slow", "poor[ly] fund[ed]", and "expensive" why should it prevent me from finding comfort that I am not all the names I have been called, but instead just Autistic like many other people out there?

Why do other people's identities absent medical diagnosis bother you when most Autistic adult organizations such as ASAN and AWN recognize conscientious self-identification of Autism as equally valid as medical diagnosis?

I'm really not going to go into my opinions on self diagnosis. I think all involved in that past discussion here have agreed to never touch that topic again. Can we keep it on topic to the original post? This has absolutely nothing to do with it.

Personally, I avoid using the Asperger's diagnosis to explain my issues to others. If I cover my ears, because of a loud sound, I will simply say, "That was loud". If I decide not to attend a social event, I will simply say, "I don't feel like going".