The lack of Adult Autism support is criminal.

Post Reply New Topic

Are we the forgotten generation? I am an adult with autism/aspergers and have recently tried the internet for support and try and make some friends due to the lack of support in the real world. Imagine my initial jubilation at the amount of organisations, forums and support networks available online. I have already racked well over two hundred friends online through networking sites and was starting to feel less alone for once.

However I suddenly realised when trying to ask for support or help from all these sites that proclaim to support and advocate autism it was very thin on the ground. I wonder if I am the only one feeling very lonely surrounded by so many, I personally feel less alone and isolated being in a room by myself than connected to the internet where there is supposed to be so many internet friends and autism organisations. The largest amount of internet support seems to be for parents of children with autism that are either preoccupied looking for advice for themselves, boasting on how they cope or even appearing to make a name for themselves through their children’s autism. What do they think is going to happen to their children when they grow up, we don’t just become normal or disappear into care homes or mental institutes. I am not having a go at most parents online nor every organisation because some do try and struggle to help others. In fact most of the parents themselves are being ignored by the very same organisations. NTs on the internet must think with the amount of autism on the net there is an epidemic however the biggest epidemic seems to be with the amount of so called groups or organisations proclaiming to help. Try communicating with so called famous autism advocates on twitter, Facebook etc and you will see how much they are willing to help spread awareness or offer help. There are even radio shows these days on autism and yet all we hear is yet another expert telling us what we think, feel and yet still no real help or support offered. The web sites today are full of “a brother speaks out,” “a parent tells how they cope.” Great but where are the real stories from the people themselves?

With my interests I have recently come across a few positive and inspirational people with Autism/Aspergers that have managed to achieve something. Question, How many autistic authors do you know? I bet you can count the amount of Novel Authors on one hand. Have you ever read/bought or supported the author by promoting their work. Have you ever bought art or employed an autistic person? Where is their support, why don’t these organisations/sites promote the work these people do and show hope in Autism? Yet the very same sites will advertise books by so called experts that write about something they haven’t got and make money from our autism. A well-known publisher is still making money from Autism/Aspergers yet doesn’t even use any or many autistic authors.
We are the so called lucky ones because we can use the internet/write on here or sometimes speak but those that don’t have a voice have to rely on others. I shouldn’t be surprised by the lack of actual support online because it just reflects the lack of support in the real world from governments, medical world and society. We will soon be in a world where only autistic people are the ones left caring about others. It seems these organisations would rather support a famous person on TV who isn’t autistic or a book on autism/aspergers by someone that doesn’t have autism, than those living with it.

Yes we need famous people to spread awareness and show support but we need to help and support and promote the people who have autism first. Don’t we? All go and support autistic people trying to achieve something for themselves and promote their work.

I totally agree with you-a child with autism becomes an adult with autism-I have been trying to get help and therapy and I feel like public enemy number one when I tell the person what I need help with-oh its very frustrating-I had an NT coworker actually help me try and find help and even he proclaimed after 20 minutes that he was frustrated and cant see how I would even cope with all that frustration. I go to a couple of adult support groups and than goodness for that because there is nothing else.

I agree too. When I first got diagnosed in my late forties, there was and still is, such a dearth of support! I was fortunate after two failures, to find a psychologist who not only diagnosed me, but treated me for the inevitable depression and anxiety that comes with this dx. After that I was able to find a support group for adults on the spectrum that only meets once a month for an hour. But it is better than nothing.

I have yet to find any sort of support, not to mention I don't even have an official diagnoses so I am kind of afraid to approach resources I have found out about because I don't want that to be a major issue.

I agree with the above comments. But I also think we have to remember that the understanding of autism is very, very new in the world. Here in the US it only came into the DSM in 1994. I grew up and went through most of my adulthood without any understanding - by myself or others- of what I am really dealing with. I think most NT psychologists and doctors have a long way to go to really understand what this thing is. It started with people with the most disabling symptoms and how it affects males and many assumptions have erroneously been made about the whole condition based on that. They are taking a very limited data base and then not understanding those of us who are outside that narrow range (and who can provide more data and a better understanding if they will look and listen).
BUT - this only means that we must press on to be heard, seen and understood, as hard as that is. We should be looking to educate THEM and not waiting and feeling bad that they haven't figured us out and then rush to our rescue. When we feel frustrated and unseen we should remind ourselves that we are the pioneers, the trail blazers, the ones who are paving the way for people in the future to have an easier time and a more complete understanding of the life of the Autist.

support is coming. i have figured out some huge pieces of this puzzle and am going to mobilize resources to get you guys real help.

don't look at your current state as stuck. you have a DEVELOPMENTAL disorder. depending on your sensory issues and how much work you are willing to do it is absolutely improvable.

if you are open to it, reading Atlas Shrugged by Ayn Rand will help a lot. that will pull you up a developmental level and make some things in life much easier for you. you may actually feel your brain being rewired as you read it. there are other ways, but this is a very effective one for a lot of people. the book is controversial -- ie people who already developed past it don't like it and tell people its bad. but for those of us who are way further back, its extremely helpful.

development is like a ladder and you have to climb up various rungs. i have a lot of other material which can bring you forward the rest of the way as aspies after ayn rand, we start way further back than everyone else. but the climbing can and does happen. you have to be willing to really work at it though.

And the leaders may not want to do more. They might feel stuck planning a once a month group, being less able to take vacations, having to respond to emails, etc.

Okay, so buddhist compassion, be aware of where they are coming from. Maybe ask if you can organize an event like an outing somewhere. But graciously accept if they say no.

What I'd really like to see us do is, organize network groups and directly invite in human resource people and entrepreneurs and make the case that people on the spectrum have a lot to offer as employees. If more of the world was multi-path rather than single-path, that would make a big, big difference. And I'll be able to explain what I mean by this.

Last edited by AardvarkGoodSwimmer on 09 Sep 2011, 1:38 pm, edited 1 time in total.

I also agree with the above comments. I have found the majority of online friends are there just to make their ‘friend’ numbers up. It is also usually the same small handful of people that are always supportive, as in life. My experience of dealing with autism organisations off the web is they only deal with people with a DX and even then usually only offer limited advice with very little support.

It is only people like us that do for others as we want to be treated, that do anything useful. It is a good topic and hopefully the organisations that read this will do more for adults with autism and asperger’s syndrome.

I try and support everyone and have just read a fantastic book. It is a novel by Mason Dove called To Kill a Stone Heart (search Google and you will find it) and both the author and protagonist have autism/aspergers. It has only just been released and is getting rave reviews from those that have read it but I haven’t seen the main autism sites pick up on it yet, they will probably wait until Mason Dove’s on TV. LOL.

Excellent point, and a very good first post.

And, by the way, Welcome to Wrong Planet!

Thanks for the lead.

And, you too, Welcome to Wrong Planet!

I hate it when the "experts" talk about us and write about us and make money off the "puzzle" that we are.

I am writing a novel with autistic characters across the whole spectrum, and they are neither sufferers or savants.

It'll give you an invaluable insight into American history past its publication date.

I completely agree with the other comments, as people don't realize that children with autism will grow up and become adults with autism. One problem is that autism wasn't seen as a spectrum, as when most of us adults were growing up, only those who were low-functioning were diagnosed with autism, and Asperger's wasn't known about widely until at 1994. Even then, it took longer before Asperger's was well known enough for therapists and psychologists to diagnose it more.

Good for you.

I've published two books about my experiences with autism. I didn't even try traditional publishing, as I don't find that it has that many benefits anymore as compared with self-publishing. Also, at least the second time, I was in a bit of a hurry.

My state has a waiver for adults with ASD. Now, the mildest people (people who can live on their own without support and do okay) wouldn't get the services, but for someone like me who doesn't need 24/7 care but does need a lot of help, it's perfect.

There are three support groups for people with Asperger's in my city, too, but there's nothing for people like me. My social group is for people with any disability but most of the people have MR. Even though we're quite different, I'm more like them than I am like the people with AS. I'd LOVE to have a social group for people more on my level though!

Great thread! I agree with the other posters here. I am nearly 50, & cannot get a proper DX. Been trying to figure out what's wrong with me since I was a kid (I was an odd child & my parents were always embarrassed or downright infuriated with my behaviors), & have been seeing shrinks since I was 7 or 8 years old. Now I'm an adult with some of the same issues (anxiety, stress, bullying, obsessions, etc) that I exhibited as a kid. I am not very social...I never feel comfortable in situations where I am surrounded by people (the more people, the higher my stress & discomfort), but I have been told I do not have AS (Inconclusive). What the Hell? What DO I have if it's not Aspergers? So no real support, no real help for stuff I experience every day. I present too well, so all of my issues are basically not bad enough to warrant assistance.

What's going to happen to all of the DXd kids when they become adults? Do they just miraculously become NT overnight upon reaching adulthood or do they disappear into the woodwork never to be seen or heard from again? I'm sure that's what most people would like to see....autistics cured or just swept under the rug for someone else to deal with.