Help! My son was diagnosed with Aspergers at 19 - now what?

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minniemum
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21 Aug 2009, 4:53 pm

Hi everyone, I was wondering if you could tell me how to get my son doing something as he is 20 and seems to be drifting along (time has no meaning in his world) doing absolutely nothing.

We only found out last year that he has Aspergers (he tells people he has Asparagus disease - but this is getting less and less now so I guess he is getting used to actually having a label attached to his uniqueness).

It is very frustrating because people do not understand what he has because he is actually very social (he has an older brother and younger sister very close in age and because I ended up being a single mum when he was only 7 he has had a very good support network with our family and friends). We all knew he was different but didnt take too much notice because he always had friends, was good at sports (he just didnt like team sports very much) he could communicate with others and of course he was bright.

He rocks (has done pretty much from the time he was born) and I have noticed as he got older that when he is anxious the rocking gets really bad (we always had a rocking chair for him - he has worn out 3!!). He loves music - this definitely calms him down.

The thing is that he is expected to be working and people keep trying to get him jobs doing manual labouring and of course he fails every time because while he understands what "hurry" means he cannot physically make himself hurry, nor can he do more than one job at a time and his co-ordination can be really bad. He loves computers but wont go on a course because he doesnt cope with a room full of strangers.

In New Zealand which is where we are from there are virtually no support groups and I have no idea what to do next. What do you suggest?

Any ideas would be great - I am going to get him to join this website as well - he loves to talk so hopefully he can meet some of you who are like minded.

Minniemum



richie
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21 Aug 2009, 5:22 pm

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Willard
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21 Aug 2009, 5:38 pm

Don't mean to scare you, but I have those very same issues at 50. Even in a 30 year career perfectly suited to my special interests, I never held a job for more than 15 months at a time. And finding a job that fits his special interests is your best bet.

Well, public assistance is your best hope, but I'm sure like everyone, he'll want to work at least part-time at something. Everybody needs to feel useful.



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21 Aug 2009, 11:15 pm

Hi, and Welcome. :)

Re support in NZ - I googled and found these - I don't know if they're active but I hope they might be useful in some way?

New Zealand Support

It's kind of sad to hear that you're alone with this in New Zealand. I had taken a notion that New Zealand was a place that was accepting of Asperger's and hoped to move there some day.

I'm retired so I'm at the other end of the career problem. I was very good at hurrying (faster! faster! faster!) so it wouldn't be useful to share my own career experience, except to say that although I was good at what I did, I got fired every couple of years. Today, there might be a kind of umbrella social assistance group to assist with working conditions and with unemployment assistance.

It occurs to me that seasonal work could be ideal. Someone once suggested I apply for tax return work, which covers 6 months of every year and the other 6 months are automatically on unemployment insurance. It need only basic intelligence, not whiz-kid math. Like a fool, I didn't apply. It might have solved everything.

Hurrying aside, what interests does your son have? They don't have to be job-like, just a direction.

Sorry for rambling!



applestooranges
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21 Aug 2009, 11:52 pm

I couldn't find much in NZ to help you out either. However, there is a doctor in Australia that may do distance consults with your current doctor. Worth a try.
There is lots you can do to help your son's daily functioning improve, including his mood, cognitive function and motivation. Even at 20 years old it's not too late to help him improve.

Unfortunately I'm a new user so I can't post a link yet but google [edited for content by sinsboldly] Or you can google Defeat Autism Now to find his listing as a clinician. There is also lots of other information on that website that may be helpful to you.



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22 Aug 2009, 12:17 am

Welcome,

If it is a problem for him to study in a room of strangers, then would something like the open university (http://www.open.ac.uk/) be a better way for him to study.


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sinsboldly
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22 Aug 2009, 12:34 am

I live in Oregon, in the States. Our regular universities, private and state, have online seminars and classes. Getting online degrees are quite do-able and eliminate the having to gather in classes, smell fragrances, have to talk to people, etc.


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crownarmourer
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22 Aug 2009, 2:06 am

From my own personal experience at that age you tend to drift and have no idea of how to cope, however in my my case I learned from my parents a good work ethic. My own step son is Autistic but very functional and he drives me to distraction with his slack of ambition and drive, I'm Aspergers so you think I would understand, however you may need to feed him to the wolves or he will never learn to cope in the real world as I many other have had to do.
Just because you have aspergers does not mean you can not hold a job and be successful and if they are really autistic then that is another matter and I mean truly lacking any social skills or the ability to look after themselves. That is where government help is needed.
The issue is set them a deadline like you leave on this date and let them focus on the real issues in life like rent, food and paying the bills. Or they will use the condition as an excuse not to develop the right social skills to live in the real world.
I learned the hard way as did many aspies of my generation when the condition did not exist.
Tough love may help. If they truly autistic then that is another matter.



Claradoon
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22 Aug 2009, 3:30 am

crownarmourer wrote:
The issue is set them a deadline like you leave on this date and let them focus on the real issues in life like rent, food and paying the bills. Or they will use the condition as an excuse not to develop the right social skills to live in the real world.
I learned the hard way as did many aspies of my generation when the condition did not exist.
Tough love may help. If they truly autistic then that is another matter.


Are you sure that the answer in your family is the answer everywhere? My family did exactly what you recommend and it destroyed me. I am now 59 and retired from a "career" of pure unmitigated hell. And when Mom got old with Alzheimer's - I took care of her! I don't know why I didn't return some tough love and tell her to get her act together or get out of my life.



IngieBee
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22 Aug 2009, 7:51 am

Well, you’re lucky he is a happy social person. Actually, my own son is quite social too! He wasn’t always, but is now. Anyway, it sounds like manual labor is out for him. I agree with sinsboldly. Looking into online schools might be the ticket! Also, if he can volunteer somewhere, it may take the pressure off of him to be productive, and may help him find his passions (perhaps an animal shelter?) encourage him to explore. He may not become independent immediately, but every journey starts with a step, eh?



aurea
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22 Aug 2009, 11:49 am

Hi, Not sure ho helpful I can b but I can try. :wink:
I'm in Australia o a little closer to home perhaps some of our services are similar
I have a 10 yr old dx'd AS,GAD,ADHD,OCD and tourettes, hoever I also have a 19yr old son
who I seriously think is on the spectrum, both my boys display their traits a little differently.
My oldest has always struggled with school, but noone did anything (apparently it was my parenting) High school was a huge struggle for him, but the school (two male teachers) did me a favor and tried to help him, he at least seen it threw to completion ( not sure how much stuck)
He then went on to do a pre apprenticeship in bricklaying (3 month in TAFE course) he did really really well, lots of support and low and behold he ws the only one there that could erect a perfect wall without a level. However he hasnt been able to make it in the bricklaying workforce. (you don't get the same level of support) and he has the problem your son has he cant move fast enough. So he has had to go on centrelink benefits. That was a problem to, because then you have to look for a number of jobs every fortnight and agree to certain conditions and he had to sign things that he had no idea what he was getting into. I had to intervene, I spoke to centrelink explained the situation, told them that I already had a son on the spectrum and told them that I thought my oldest was as well. So centrelink sent him off for a job capacity assessment, this so far has been the best thing that could have happened to him. From that assessment he was referred to a job rehab place and they have an entire team of experts that will be working with him. They have told my son that even though he still has to report to centrelink every fortnight, he doesnt need to look for work right now. hey are going to work on his motivation, depression reading skills, writing skills the whole lot. Then they will help place him in a job he has an interest in and they will support that placement for at least two years. Apparently they can offer employers finacial incentives for taking him on as well.
Anyway I just thought I would share all that with you. (sorry it took so long) Its not easy trying to get them to do anything when they are legally adults but so dam dependant. I to am a single mum. Good luck.



minniemum
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24 Aug 2009, 8:11 pm

You have great ideas and I am definitely going with them.

While I havent done the tough love thing I have always encouraged my kids to be independent (I am a push over with my kids which isnt always the best thing) and my son actually lives with friends in another town and region from me. I moved a couple of years ago to another town for a new job and the kids wanted to stay where they were. So he is learning to cope with things like money, and payment of bills. He gets an Invalid's benefit over here which recognises that he has a disability which makes it very difficult for him to get employment and keep employment.

Unfortunately he had a really bad experience with our local government office that manages benefits (and what was worse was that I had worked in that office for many years and he knew the people that treated him badly) so now he only goes to see them if he absolutely has to!! He has had a couple of jobs but hasnt been able to keep them and the employers have not been honest with him either as to why he doesnt keep the job which makes things worse.

The support of government agencies has been a total waste of time so far because they will not listen to what I say as to his capabilities and they send him off to totally unsuitable job situations and blame it on him when it doesnt work!! ! Grrrrr. After those experiences he turns into a brick wall again and disappears into his headphones and music. My frustration comes from the fact that these people who supposedly want to help, dont!! They dont listen, treat me like an overprotective mother who makes excuses for her son and then disappear when the going gets too tough!!

But it isnt all bad - he is the most reliable worker you could ever hope to get - he is never late and all the employers have said they wished their other workers were just as good.

The suppport groups here in New Zealand have shown a total lack of interest in helping because they think we might be after funding for him and he is too old.

We are now looking at online courses because I think this is the only thing left to do. He wants to work but he is so unrealistic in his goal setting. Last week he had decided to become a Lawyer by going to university (and while I dont want to stop him dreaming he didnt even get any qualifications at High School and he left as soon as he was 15 - which is the age you are allowed to leave in New Zealand).

I am going to work through everything you have suggested and I am letting him feel his way - I dont want to make his life hell by forcing him to do something he doesnt want to do or wont cope with, or be something that he isnt.

I am very proud to say that my son is so lovable, sensitive, caring, loyal, gorgeous and bright and I wouldnt swap him and his asparagus disease for anything in this world or the next. There are so many positives to this - he is fantastic on a quiz night (he soaks up information like a sponge), he remembers my birthday when the other kids dont, he will buy me flowers when he knows I am down (and he does the same with his siblings and friends). Our life would be a sad world without him in it.

I had absolutely no idea what Aspergers was until my son was diagnosed with it - but what has really blown me away is how many amazing people in this world have it and the achievements that are out there. To think some of you made it right through to your 50's without any help or a diagnosis is an inspiration, especially when you must have felt that "the rest of the world was so weird and illogical" (my son's interpretation of life).

Thanks again.
Minniemum