After getting diagnosed thoughts on ASD Communites and self?

Post Reply New Topic

This question is only for those who are diagnosed. If you are not diagnosed you're welcome to respond to other people but please don't make this thread about you.

So I hit age 30 my life was in ruins my youngest son was diagnosed with Autism and after years of people telling me I was useless and there was something wrong with me I decided to go get tested and see a psychologist. Those who I would consider close who told me there was something wrong with me did not want me to get diagnosed they all had their own Dr Mom diagnosis and only wished for their views to be true.

When I was diagnosed it took me a month or two to reflect on it and those who all of a sudden claimed there was nothing wrong with me decided to attack me claiming Autism was a lie, or that I am not autistic and I am just a know it all liar. One person got so mad you could hear the heavy breathing saying how she wished she was there to tell them how I really was!

This led me to discover ASD Communites after my diagnosis. I did not wish to go claiming something I did not know I was before my diagnosis because I am not a medically trained personal and listening to self prescribed Dr Moms are the reason why treatment in my case was delayed for so long.

Before I came to ASD Communities I always was curious to learn about different cultures one disabled culture I find unique was the deaf community which they are often thought to be rude or always upset in the ways they communicate.

One of the biggest problems I ran into was the diva self diagnosed autistic. Everywhere I ran to even those that required members be diagnosed were bombarded by diva self diagnosed autistics. It reminded me first of the movie Fight Club in which a character Marla Singer would become a tourist in therapy groups in which she would pretend to become whatever the therapy group was for attention even going as far as attending a testicular cancer survivor group.

I have never seen this before and I still don't understand it all. It's like going to a deaf or cancer group claiming your a self diagnosed cancer patient?

These members often told people like my Dr Mom family don't get diagnosed often berating people who wish to know because they know in their heart what they are. One popular girl blogger of one community finally got diagnosed and she wrote about it on her blog. After years of claiming she was Autistic, go figure she had something similar but completely different from autism but she still uses the "aspie girl" handle.

It really bothered and still bothers me that there are groups out there that are full but have members who we do not know what they have but are taking up space for people who are diagnosised as Autistic. Thankfully most government funded groups, programs require a diagnosis otherwise anyone with autism would be screwed trying to get help since help for us is barely funded.

I notice trends and one trends I noticed most Self diagnosed autistic are from countries with free socialized healthcare which means years of waiting for a simple diagnosis and a bunch of run a rounds as they told it. Some could get a diagnosis but it means tons of out-of-pocket expenses.

Another group I ran into the Autism supremacists who believe autistic are superior to all and anyone who is not autistic is below us. This would of suprised me but as I mentioned earlier I am on deaf community forums in which there are Deaf supremacists who believed the hearing world should be culled and some Deaf Couples who talk about making sure their children if they are of the hearing world get turned deaf.

I've also run into groups in which are dominated by NT families mostly moms. These mom's often hyjack the converstation of how can we help our autistic children and adult children into a club for Autistic Parents to circle jerk each other talking how great they are and how their kids need to figure it out and normalize.

Facebook of all places I ran into some amazing autistic groups in which are mostly run by diagnosised autistics only issue we ever run into here was the run off the mill self diagnosised autistic coming in for attention and then massively sending everyone messages after they been kicked.

Overall its been good but weird. The werid part being that people can literally diagnosis themselves and run around saying they have whatever.

I can't speak about elsewhere on the net but from what I have noticed here most self diagnosed here are middle age adults who did extensive research before self diagnosing. Common reasons given for not getting professionally diagnosed are it is not affordable (insurers usually won't cover the cost of Adult assessment in America), there are no clinitions competent in diagnosing adult autism within hundreds of miles of where the self diagnosed live, nothing to be gained because of a paucity of benifits for adults, fear of negative consequences if employers find out. Unfortunately while they a small minority we do have supremacists here.

I agree what ASPartOfMe is saying here. Most of the self-diagnosed I've run into (I was one) are doing a lot of serious, carefully thought out groundwork and are just trying to figure out what they are. They don't seem to be just looking for an excuse to be obnoxious. It is difficult to get a professional diagnosis. It took me several months to find a qualified psychologist covered by my insurance, then several weeks waiting for an appointment, then 6 weeks to get the results. I am glad I got it, just to know for a fact what I am dealing with. It is true, though, I have not had much luck finding the sort of assistance I had hoped for, like some sort of therapies to help with social skills or coping with sensory issues. It's still early days, though, so I am hoping to have better luck still.

I think that other people on the spectrum, whether they be self-diagnosed or professionally diagnosed, have been much more helpful than any professional therapist ever was. They have given me so many tips for coping and just general encouragement. I think it's hard for professionals to really understand what is going on inside us. I look fairly competent, have a job, a spouse, why do I think I need help? They have no idea how often I am panicked by the most ordinary things, like my commute or a staff meeting.

I don't hate self diagnosers, don't get me wrong. I can see why they do it, too. But I don't think it's valid. I've even seen it argued that their "diagnosis" is actually more accurate than a professional one. I don't agree with that.

If someone says they suspect they have an ASD and comes here trying to understand how they get tested I think that's absolutely fine. That's why I don't think it'd make sense to only allow diagnosed people here. People undergoing diagnosis also need help.

And yeah, the autism supremacy people drive me nuts. There are a few members here that hold that view. It confuses me how anyone can think that we're supreme to NTs. Usually this is based on false stereotypes of the NTs; that they're all party animals, all enjoy and never stop socialising, all uneducated and ignorant etc.

But WP definitely does sound better than your experience of real life support groups.

I used Google Translator, sorry.


I'm self-diagnostic (from 2011) but on October 1 I will go to a specialist in Rome and with him I already did some testing. He worked with Tony Attwood with the test RAAD-S for Italy.
In Italian hospitals the diagnosis are totaly free, but it takes several months to get a diagnosis and the doctors are not trained to recognize autism in adults. Some doctors believe that autism in adults does not exist. The situation in Italy is not as in France (Luckily!), but for adults there are many problems.

I only need a diagnosis to get some help better through the psychologist. Over the last 10 years I have turned to some psychologists and psychiatrists, and only in 2011 I discovered alone asperger syndrome. I've never told anyone about the AS and I'll never tell anyone. I'm 37 now and AS is a bug in me. But I need help as CBT because I have problems in relationships with people, anxiety, etc ...

I attend a virtual community of Italian ASD for almost four years. Most of the users are adults, but sometimes it happens that a boy arrives in the forum which is self diagnosed ASD because he read it on Wikipedia!
I think we need to understand that it is difficult to diagnose in adults
We need to understand that having Asperger's means having problems and not only extraordinary gifts. Some people who self diagnose AS often boast of their IQ forgetting ASD problems.

We have to understand that without the virtual communities as WrongPlanet, most adults diagnosed still fail to understand themselves and continue to spend money in the wrong therapies.