People are discouraging me from getting a diagnosis

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Having autism is not a reasonable excuse for "almost" losing the garage door opener, or wearing a hat while eating. Having a dx isn't going to make many people cut you any slack at all. People are always going to expect you to keep your agreements... no excuses accepted.

I have been told repeatedly that if I had received a diagnosis before the age of 18 I would have all kinds of resources but after the age of 18 I would have none. I have contacted almost all of the organizations in my area that deal with Autism and they all say the same thing. The resources in this country are geared to help children. There are private organizations that do help adults but the kind of help I found in my area was how to do a load of laundry and use a stove. I don't need that kind of help. In the UK you could get housing or government funds to help you. Here I was told that that would be impossible if I ever needed it because I got found out after the age of 18. If I wanted therapy I would have to pay myself. I would not be able to get it otherwise. I don't know if it is different in other areas of the US but I was told by many people who work in Autism organizations in my area that I contacted that 18 is the cutoff for being able to get significant help. But I guess it might depend on the kind of help you need. If anything were to happen to my husband I could very easily see myself homeless for the rest of my life. I would be very happy if I found out that these people had misinformed me and that there was hope for real help as a diagnosed adult. But I have had more than one person who works in an ASD organization tell me that their reasoning is that if you have managed to live this long without their help than obviously you don't need it.

That's not what I'm saying, you took that totally out of context. I'm saying that no matter what I do I still end up getting in trouble for many small things like this that shouldn't be such a big deal, because when I try to explain myself I can't do so effectively. This is the problem I was trying to describe, it escalates because I apparently come across as defiant and disrespectful when all I am trying to do is provide an explanation, and I can never figure out how they expect me to respond to them. This has been a problem all my life, I just do things that I don't know bother people, and then they do get much more offended than I thought they would, and it creates problems. My biggest problems in life are with communicating my thoughts effectively and understanding what others expect of me. I don't want to have an excuse to do things that are annoying to them. To be honest, if I do get a diagnosis they still probably won't understand how these things are connected and not a whole lot will change at first, but at least I can start getting help from a professional that can help me understand what I can do to prevent things like this from happening so frequently.

All my therapy up to this point hasn't been very effective if at all, because I try the counselor's suggestions and they never work for me. But I believe it is because the problems are always taken out of context by my therapist, because neither I nor they had any idea I might have a form of autism. The fundamental issue is completely different if I do have autism, as compared to a neurotypical having similar issues. In the neurotypical, the issues would probably be related to a defiant attitude or a refusal to try to understand the other party's viewpoint. But in someone with AS, the same problems could be caused by a lack of effective communication and a lack of ability to empathize rather than a refusal to try to do so. I try to think from their perspective how they would want me to act but I usually get it wrong and then get into arguments. This has happened in so many of my interactions with family, friends, acquaintances, even total strangers. Everyone thinks I'm really immature, not motivated, and self-centered no matter what I say.

It's kind of interesting, your response to what I said compared to what I actually meant proves my point, I have a really hard time getting people to see the point of what I do, and thus come off as trying to make excuses to do pointless things. And this is probably because I focus too much on the trivial details of the issues (like wearing a hat or losing the garage door opener) rather than just explaining the issues themselves. And as this is part of the way many people with AS think, I really believe getting a diagnosis and help from a specialist would help me.

To my knowledge, once you grow up, you lose access to the services offered in childhood. I found this article to illustrate:

http://www.childmind.org/en/posts/artic ... e-services

L. Holmes, I suspect your family may not be ready to admit to themselves that you have a clinical condition affecting your behavior, they may also have some stereotypes about Autism or Asperger's that they are trying to overcome or feel you will be labeled with.

I would suggest two things.

1) View "What is Asperger's Syndrome" by the National Center for Learning Disabilites on youtube. It's fairly short but concise and to the point. It's also easy to understand. If you still feel this describes you, find a time to watch it with your Grandparents and very lovingly tell them you think this describes you, that you want help in finding out for sure and ask them to support you in this. Regardless of why people are advising you to avoid diagnosis, I'm sure your Grandparents love you and will support you if you convey how important getting a diagnosis is to you.

2) Once you are convinced in your own mind that you have Asperger's, there are a couple of avenue's to getting a diagnosis. They vary somewhat based on where you live. I live in Illinois in the US and have just recently gone through some of this and have an appointment to get a formal diagnosis scheduled for August. If you want to PM me, I'll be happy to help with this. If you prefer to do it on your own here are some recommendations:

A) Call your local Hospital and ask if they or another facility in the area have a Neuroscience division that could assist with an Autism diagnosis. This ultimately is what I believe will be most helpful and reputable.

B) GRASP (Global Regional Asperger's Partnership) has a website you can register with. Once you tell them where you live they will send you some recommended clinics/psychologists.

C) Some states have a non-profit Autism Society. Try running an internet search on Autism + "Your State". Get a number and call them. They can usually give great advice about things you have not even thought of yet.

D) DO NOT just call a Psychologist office in your insurance plan and ask if they could assist with an Autism diagnosis. Asperger's is complicated, yet Psychologists want your business. I wasted a lot of time and money doing this. When I confronted one LCSW with his past experience working with Autism, he replied, "Well I had to write a paper about it in college once." Use one of the above options, it will save headaches.

Whoooa, there's a lot of misinformation on this thread about late diagnoses.

Yes, it can be very hard to find services as an adult. It can range from fairly easy in places known for good autism services (like Massachusetts or New York City) to maddeningly and meltdown-inducingly difficult (like where I live) to impossible without long travel (like in some rural areas). It can be prohibitively expensive if you don't have health insurance or Medicaid. You might have to run yourself ragged to find it, but it IS there.

Developmental disability agencies say that the disability has to BEGIN before a certain age, usually somewhere in the 18-21 range. BY DEFINITION, any form of autism begins in early childhood. If it doesn't, it's not autism. Anyone who tells you that the DIAGNOSIS has to be before a certain age is wrong. I had someone from the state developmental disability agency tell me that. I had a huge meltdown and had to call back after I calmed down, but I eventually spoke to a supervisor who knew the policy correctly and sent me an application.

I get occupational therapy through Medicaid now, but if I qualify for the state agency, I can get staff and training and all kinds of things I should have had decades ago.

Also, even if you can't get into the state agency, you'll need a diagnosis if you want accommodations for work or school. I never thought I'd consider going back to college, but knowing now what I do about the kind of support I can get with a diagnosis, I'm not only planning to go back, I'm actually somewhat optimistic about it.

I hope you do pursue a diagnosis and get the support that you need. I won't sugarcoat it and say that there isn't a strong possibility that it'll be a long and discouraging road, but if you can keep sight of why you're doing it and hold onto the fact that YOU DESERVE IT NO MATTER WHAT ANYONE SAYS, it's definitely achievable. Good luck.

I apologise for ruffling so many feathers, but I think that, overall, the thread supports my view that a professional adult diagnosis of ASD is in no way guaranteed to make life better for the sufferer. I think it is important to understand that message before proceeding.

If you are unable to deal with the practicalities of daily living, or your behaviour is so extreme that the rest of society needs to be protected from you, then you will probably be 'helped' whether you like it or not, and nobody will be very interested in whether you suffer from ASD, Cerebral Palsy, Downs Syndrome or Munchausen by Proxy. I saw a statistic once that a high proportion of petty offenders, homeless people and junkies are on the Autistic Spectrum but undiagnosed - 'help' can come in many forms, including a custodial prison sentence.

The OP appears to be in search of peace of mind and understanding from the family. These requirements are inter-dependent and unlikely to be met by any kind of therapy.

My own experience was that I needed to build my own case, and then find a way to present it to the family. I did a lot of reading, and bought quite a lot of books. I then waited quite a long time for the opportunity to lay out my evidence to a receptive audience. It might be useful for the OP to accidentally leave a few books or newspaper articles lying around for a while. In the UK, the NAS produces a magazine for adults which is called Asperger United - my son took quite a while to pick up the clues, but one of his favourite jokes now is that the words 'Asperger' and 'United' are contradictory and mutually exclusive.

ASD is no more than a matter of opinion - there are no definitive tests like blood tests, x-rays or DNA analysis etc. And there is definitely no cure...

I thought it was common for people on the spectrum to have some troubles with being scatter brained....as in things like almost losing the garage door opener, forgetting you're even wearing a hat let alone remembering to take it off while eating(though not sure why its a big deal if someone wears a hat or not while eating, its their head isn't it?). Or maybe the forgetful stuff isn't exactly related to autism but it can certainly be very difficult...probably hard to understand for people who aren't constantly losing things, forgetting things ect no matter how hard they try to remember and not lose things that it can be a significant difficulty.

But you're right its not an 'excuse', but I'd say more of a valid reason for that sort of thing....

I get your message, but I don't see how this thread supports it.


Wouldn't it be better to get help before things get that bad?


True, but there are things available (mostly medication) that can improve behaviour and coping. And at least professionals have some education and experience that allows them to make a diagnosis.

I don't think its nothing more than a matter of opinion, otherwise there would not be common simular symptoms pointing to autism.....I do agree getting a diagnoses in adulthood does not make life better per say, can help you get SSI if you can't hold a job so if you have no money then you will have some, but that doesn't exactly majorly improve quality of life or make anything less severe.

Also though I don't see prison sentences for petty offenders or junkies who may suffer from a condition like autism or something else can really be considered a form of help.....not sure i have heard of a prison sentence helping anyone in that sort of position. But yes some 'help' available is not what it is cut out to be...I have been in the psych ward twice and both facilities where pretty different...part that sucks about that is your more vulnerable being in a locked ward so if doctors/staff/nurses did want to harrass/abuse they could, luckily I didn't really run into that.

It would be infinitely better, but national health services tend to be re-active rather than pro-active. A professional diagnosis of ASD is not necessarily a prescription for any kind of treatment - medications can be useful for controlling certain types of behaviour, but there is no requirement to be diagnosed as ASD in order to present the various behaviours which various drugs are designed to control.

Huge numbers of people (including me) have made their way through life without diagnosis, treatment or medication or any other kind of state assistance.

And I don't see much evidence that current procedures are making a great deal of improvement to peoples' life chances - on the contrary, I believe that for too many people, a diagnosis of ASD simply labels them as deficient in some way, and as a result, they lose incentive to take responsibility for their own well-being.

Nicholasname thank you for your post. This is very encouraging to me because like I said, every single person I have spoken to in my area that works in Autism has told me that availability of help is based on your age when you get the diagnosis. I don't know whom to talk to to see if there are resources for me in my area. Even ARC and Autism Works have not been helpful at all to me. Hopefully I can find out if there are other people I can talk to.

i suppose since you're from england that your experiences and culture and treatments differ from most of the united states(even state to state can vary). but there lately has been a test that can actually test a certain autism gene. not many test positive for it, but those that do are diagnosed as "autism type 1".

not to side track the thread but classic autism doesnt suddenly become aspergers with medication-they are different presentations of autism,those of us with classic autism and whom are non verbal directly because of our autism dont suddenly become verbal from medication.

thats how the med helps me.. i still have great difficulties, but atleast its possible. otherwise the only words i can get out (if im "lucky") is "yes" and "no". and even then, they dont come out sounding natural.
and its not two seperate disorders, they are a spectrum. with one end being classic autism, and the far other end being high functioning(independant) aspergers. (at least thats the little bar thing ive seen showed).
by what i said earlier, i meant the severity and the symptoms that follow along. im classic autism, but if im on the med, those who know me now only see aspergers. but my developement and childhood progress was still as it was(delayed, and some not accomplished until my preteen years). but because therapists werent around me while those early years, and all they see is what they see me as in the present, they only "see" aspergers. but my schools, parents, and hospitalizations provides the proof of my verbal speech delay, and speech therapy, and the intial diagnosis of autism when i was 4yr.
and off of the med suddenly, those who have only known me since ive been on the med think im full of behavioral issues and "making it up", while those who knew me prior to 2009(when i started the med) know that im just like i was prior to taking vyvanse (the med). which is most noticeable to others, through my speaking difficulties.

I have had multiple people tell me that the diagnosis is just a piece of paper, and will only help if you are looking for sympathy, or an excuse. That's false. Like NicholasName says, accommodations are available at colleges, workplaces etc. and that is a huge part of why I am seeking a diagnosis. I did terribly at college, I got so overwhelmed with everything I had to do that I mentally shut down for the last 2 months I was there. There is almost no way I'd go back unless I knew I had a way to handle it, and even the smaller accommodations offered would probably help me a lot. But a college isn't just going to take your self-diagnosis as a legitimate reason to get these accommodations.

Some people may not need anything like this and that's good for them, but I am not those people. I want a diagnosis because I want to have a better understanding of my strengths and my limits, but I don't like operating in assumptions, and even though I am very sure all the signs point to me having Asperger's, to me it would feel like continuing to pretend I can be like others when I know I can't. I felt very different from others even as a child, and growing up I learned from family, friends, teachers and peers that this difference was that I was lazy, defiant, selfish, etc. elven though I knew I was trying.

I thought I was simply defective for my whole life, and that I was destined for failure. But when finally I made this discovery, that there could be a legitimate reason I have not been at the same level as my peers, I started thinking things were truly looking up for once. I still have a lot of doubts and second guessing going on in my head, and I think it's a result of going my whole life having every reason I had for my behavior dismissed as a lie or an excuse, and a constant barrage of advice telling me to "try harder" even when I tried explaining that I was already at my limit. So I am really wanting to prove it to myself that I was never defective and that I just need to do things differently than others would. That alone is a totally legitimate reason to pursue a diagnosis.