Mom wants more info on Transition to Adulthood

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Hi,

My name is Ellen and I have a 16 yo Aspie. I have posted before on the Parent's Discussion with apparently a very bad description of what my problem with my son was. First, I want to apologize to all those out there that were confused by my posts on "16 yo without a clue". I have been corresponding with a poster on the site and understand that I really botched that whole thing up. I first said that my son was perfect and then explained that I was imposing very harsh punishments. That was very confusing to all of you . I am sorry . I did not give an accurate portrayal of what was happening, and your reactions were appropriate in the beginning and snowballed after I continued to be unclear about what I wanted.

I really don't want to revisit this, but I wanted you to know that I am sorry. I was assuming that I was posting on a forum only for parents of those with autism, and explained myself very poorly for the audience that it really was .

Please let's let the previous topic die - it was not worded well, it did not help me , and only upset those on wrongplanet . I am trying to start anew .

'nough said.

-----

After much searching of my own mind , I decided that what I really wanted to understand was the transition from adolescence to adulthood so that I could use your experiences as a "looking-glass" into my son's possible future.

I have put together a survey that addressed my concerns. Please know that this is a completely anonymous survey and there is no way for me to figure out who you are unless you give identifying information. I will be sharing the results on this website and other listservs that I belong to. This sharing will include comments, so please if you want to be anonymous, do not enter identifying information.

I would appreciate if your responses to the survey could be candid: honest and open. Being very concerned about your feelings, I have run the survey past the person whom I have been emailing from wrongplanet - another person with Aspergers. While I cannot speak for others, I myself, will not be placing any judgment on your responses. I just want to know what I can expect from those with Asperger's/Autism so that I react appropriately as my son proceeds through this transitional process. I am also hoping that this information will help other parents and their young adults with autism who are in the same place as I am now.

If you have autism AND are at least 16; OR you have autism AND you remember your years between 16 and 25 (my son does not remember his past) please consider taking the following survey:

http://www.surveymonkey.com/s.aspx?sm=n ... or8w_3d_3d" (THIS NO LONGER EXISTS)

The new link is:

http://www.surveymonkey.com/s.aspx?sm=u ... ecMA_3d_3d


The survey will remain open so long as I continue to get responses - I suspect about a month.

Thank you very much.

--Ellen

Last edited by Ellen3057 on 20 Jun 2009, 8:00 pm, edited 1 time in total.

good question but its really hazy, for aspies the transition for aspie is really varied as many aspies have child like qualities for example I am 21 and very childish but very clver at the same time, the most logical answer for you unfortunately is how long is a piece of string because there is no true answer and hardly no research is being poured into this area

Hey Ellen, I tried to respond to your survey but it was faulty (my answers kept disappearing, and it wouldn't let me tick two boxes directly vertical. You might want to look into that.

Anyway, don't stress, I'm sure all of us here understand what wording things wrongly by mistake is like.

I'm a 21yo aspie, and I find that I do gain life skills as I get older - but just at a slower rate than my peers (it's taken me longer to learn how to use my bank account, get casual jobs, look after myself, etc but I have still managed to learn it). It also depends on how high functioning your son is. Every aspie is different - personally I have always been classed as very high functioning, and I believe that I will eventually be able to do nearly all the things other people do but it will just take me a lot longer to learn the processes. I think the best thing you can do for your son is to sit down with him and teach him all this stuff - teach him how to cook and clean up after himself, teach him how to use a bank account, teach him how to write a resume etc. Teach him in lots of detail and take it slow - you would probably need to teach him more thoroughly than you would a non-AS child (who would pick up more things on their own without help). Don't stress him out or cause him to panic by expecting too much on him at once. Don't set age limits (like - you have to achieved independence by the time you're 21 etc), but teach him one step at a time.

As they say, slow and steady wins the race.

As far as friendships and relationships and all that go - you might need to help him and teach him that stuff too, because it won't be inherently obvious to him what to do in those situations.

I have never seen so many emoticons used in a serious post before...

So shiny...

Sunshower:

This is actually an online survey site and not my own survey site. If you were having trouble, I suspect it was your computer - but of course you would know better than I would.

Once you get to the survey on a certain computer, the site will not allow you to go back. So sorry - I personally wouldn't have cared how many time anyone took the survey - except for malicious reasons.

----

Thanks for the input that followed the quote above.

SteveeVader:

I get really frustrated too by the lack of information on this subject. That was why I tried the survey. I wanted real people with real experiences. I want to help my son as he really is, not whom I see him through my own "wrong" eyes.

I know that the NT world leaves you at a loss to describe yourself. My son feels the same way and thus I cannot ask him.

He is very bright (since you didn't mention your intelligence), but like you he is also very "childish". I am told that it sometimes gets easier with age, but sometimes it doesn't.

I wish you luck and hope for you all the best things.

Thanks for taking the time.

--Ellen

I'll give you the facts:

For those with AS, the majority will live at home with their parents, won't work, and will have few or no friends (this is pretty much a direct quote); most complete high school, but they rarely go any further

For those with HFA, the majority will live at home or in an institution, won't work (if they do, it's usually very mundane stuff), and will have no friends (another direct quote); most complete high school, but they rarely go any further


This is from one study, and all others say the same thing.

But that's B.S. I don't buy it!

Here you go:

Outcome research in Asperger syndrome and autism [HFA].

I can provide many, many more that say the same thing, as I have them all saved.

How about this one?

From: Journal of autism and developmental disorders
Volume: 38
Issue: 7
Month: August, 2008
Pages: 1359-1370
Article Title: VanBergeijk "Supporting More Able Students on the Autism Spectrum; College and Beyond"

--Ellen

Hiya. If you want to PM me you can. There is an issue with your survey in the first part. I have atypical autism (PDD-NOS). But I am living on my own and had a reasonably decent transition (I went away for school, I have a JD).

My one advice is you are going to need patience. Some steps take longer than others and we really do have to do it in our own way. From your previous post your son does sound incredibly intelligent. Which is positive....if he can get a graduate degree , he should find a job. Unless he can do programming, an undergraduate degree should do fine.

I can go into the details of my transition. But please be aware 25 may be to early a date to shoot for. Late twenties is more realistic to complete transition. If things happen earlier all the better though. The good news he is in the genius/savant category, which means he does have a shot.

That's about supporting those who make it to college, and the help and accommodations needed to succeed, nothing about outcome for the population as a whole.

A book you might like is, "High-functioning individuals with Autism". It goes through the various types of HFA and AS, and their probable outcomes based on what type they have. Someone like Rain Man (aloof variant of HFA/AS) will be far different to someone like...Mr Bean (odd and eccentric variant of HFA/AS), who is independent as an adult (to use fictional examples).

So, you first need to see what type of HFA/AS your son has, which may not be possible until he is an adult. Just don't push [too hard] or force anything, and he'll do the best he can.

Hmm might be my computer. It is an Apple. Hahaha I wouldn't know better than you, I'm hopeless at technology. I hope others manage to do the survey, if you don't get any responses maybe try another site next time (It would be a pity if you didn't because I can see you put a lot of time and work into the survey).

I read a bit of your other post to get some more insight (but not the whole thing because I didn't have time).

As far as the stats go - they are probably true, but also life is what you make of it. I am a firm believer in sitting down with your son and talking him through these things. Treat him like an adult and explain to him why it's so important he learns these basic functions, and since he desires independence - use that! Explain that to achieve independence he needs to learn these things, and not just because you say so - but because logically independence is impossible without them. Be very logical and it will probably get through to him more than emotional punishment (which is more confusing than anything to an aspie).

If he still refuses to listen to reason (after you sit down and have a heart to heart with him like two adults, rather than like an adult to a child, and you keep it non-emotional/confrontation, but logical and friendly), then don't give up - perhaps he hasn't matured enough yet to see things the way he needs to see them.

If it helps, I am similar to your son - I have a massive book collection, and when I was younger up until around age 18 or so I would pretty much live in my own fantasy world with my head in a book nearly 24/7. That was all I wanted to do. My parents (apart from insisting I help with housework, etc) pretty much left me to it; I was allowed to do what I liked in my spare time. It took until I was 18 for me to start maturing and looking outside of myself, and that's when I began reaching out more and trying to learn new things (that weren't specifically my interests). My parents encouraged me and helped me to understand some of these things bit by bit. At the age of 21 I am able to earn enough money to pay for all extras such as clothing, toiletries, and recreational stuff (while my parents pay for food and accommodation), and I am about to start paying my parents some rent money towards that on a weekly basis as well (the amount which will start small and slowly increase as I am able to earn more money). I am able to live in college and look after myself and attend uni, with a little help in organization with a weekly meeting with a social worker, with meals provided and my room vacuumed once a week (I do my washing, and buy the other things I need to live with my own money, and do my uni work). I have and use my own bank account and I have successfully worked casual holiday jobs and I know how to save. I am steadily working my way towards complete independence and I will never give up until I reach this goal.

Taken into account, when I was diagnosed they said I was very mild - so it might take longer generally to achieve these milestones. It all depends on the individual.

What Danielismyname says is probably true. But at the same time, life is what you make of it, and a majority isn't all. Many aspies do not have a supportive mother like you who wants the best for them and is prepared to push them to help them along in life (I am lucky enough to have a mum like this). The best approach to deal with your son is definitely the rational, logical, adult-adult approach. I know that in my life I have always responded best to this approach. The emotional, negative reinforcement approach is unlikely to work as effectively with an aspie - and emotional scenes tend to be more confusing than attitude changing for aspies. Again, state in clear language (which letting strong emotions influence your speech) with logical reasons why he needs to learn these things, and you'll probably get the best response from him. Try to keep from displaying negative emotions, because these can be very upsetting to an aspie (as they are to all people!), but especially to an aspie because they can't understand them - they are like an incomprehensible deluge.

Also, if your son tells you he's trying his hardest, then he probably is. I'd say this to my mum, being completely truthful, and using NT logic she would think I was being dishonest or manipulating her. I don't know how to manipulate. Generally aspies are very forthright and honest in their speech.

Finally, I think you're doing very well and the effort you're putting in to be a good parent is highly admirable. You should be very proud of yourself, and your son is lucky he has a mother who cares so much about him and wants him to have a good life. While it is hard for aspies growing up, it is equally hard (if not harder) for an NT mother to try and bring up an aspie (I understand this first hand). It takes immeasurable patience and determination, which mostly goes unacknowledged or rightfully praised. There is no right and wrong ways of communication, the NT and the AS communication styles are different, but equally valid. As the parent, yours is the heavier burden to bear because you are the one who has to circumvent the communication boundaries and learn your sons language (as he is too young to understand the need to learn yours). Hopefully one day your son will come to understand what you have done for him, and how much you care about him, and will reach out to you as you have reached out to him.

I dont trust the percentages on those outcome studies done for people with autism. To put it simply, the people who go to doctors and get referred to studies are the ones who are having the most problems. It would be like going to a monster truck rally and taking a poll to see how many people like Auto Shows. It isnt anywhere close to being an unbiased sampling.

Also, those studies were done on people diagnosed with autism 2 decades ago. 20 years ago, in order to qualify for a diagnosis of autism you had to have significant difficulties. Much more then anybody diagnosed with asperger syndrome today would show.

It is like comparing apples and oranges.

The highest employment figure I've found for those with AS is about 30%, and this is in the US (it still stated that most were given jobs by their families or low-tier stuff, no matter how intelligent they were). As of now, it's about 15% in the UK.

Social relations and independent living seem to be the hardest aspects for those with an ASD; many can handle predictable and routine orientated work, and many do live semi-independently or independently [even if the majority don't], but hardly any will ever marry*.

*It's usually those who're borderline or really high functioning (even for AS), who do such.

The Autism statistics have stayed relatively stable since the beginning (LFA and HFA), so I have little doubt that it'll be any different for those with AS, i.e., that it'll improve dramatically.

A disability is what it is (as per the diagnostic manual), and that's life.

No, it's not just your computer. I tried it too.