Looking for advice and help with Asperger syndrome

[Stan]

Hi Everyone,
I am new to this forum. I have been reading through some of the posts and I must admit that this is a great site.

Myself and my wife are looking to get some advice and help for "Stan" who is my wife's younger brother or my brother in law.

A bit about Stan. Stan is currently 23 years old. Stan has been living with myself and my wife for the past 5 months. Stan was recently diagnosed by a psychologist to have Asperger syndrome.

Stan was brought up in a strict Christian family. He went to a private school all of his life. During his elementary years, teachers and other school staff realized that Stan was different then others. He lacked the ability to learn like the others. He did very poorly in all his classes. The school board recommended that Stan be put into a special schools for those students who had disabilities, however his parents would not allow this. They made the mistake of denying to accept the fact that their son had a disability. As a result of this he continued on in a regular classroom environment with normal students. While his classmates did algebra, he was given multiplication. He was far behind others. Socially, he did not have any friends nor did his parents allow him to go out to make friends outside of the school or church setting. His father being a very strict father, had a set of rules which Stan was to follow. His father in frustration for him not learning has physically disciplined him to force him to learn. An example of Stan being disciplined: When Stan was 7 years old, he was having problems learning to ride a bike. His father tried teaching him for several days. Because he could not learn, he was beaten by his dad. He has lived in fear of his father all his life and even today when he even hears about his Dad he is scared. If you ever asked him about his father, he would only tell you good things. Both of his parents have been anti social all of their lives which has not helped Stan. It has only made it worse for him. Stan is extremely awkward around other people. He tends to stare at people. He has the tendency to spy on people, peek out the windows, tip toe around the house so nobody hears him coming etc.

Stan was not formally diagnosed with anything other then being told that he is just slow, until recently.

Five months ago, myself and my wife decided to ask Stan if he would like to come and live with us. The reason for doing this was to talk to him and to perhaps find out what was wrong with him and find ways to help him. After Stan moved in we decided to give him a bit of break, from what he was used to. We let him take it easy. No house chores as he was forced to do at home, he was never allowed to watch TV growing up, or even listen to the radio. We gave him the freedom that he always wanted and never had due to a strict father. By Stan moving in with us, it ruined the relationship that my wife had with her family, however it was done in order to help Stan.

In order to find out what is wrong with him, we have been taking him to a psychologist, who recently told us that Stan has Asperger disorder. We are lost and don't know what to do.

Stan is not capable of anything at all. We have tried to get him to do basic stuff around the house, but he seems to have no interest in it at all. If he does something, he can never do it properly, or does not seem happy to do anything. We have tried to get him a job, however nobody seems to want to hire him, as when he is in an interview he does not give them the impression that he even wants a job. Even McDonalds was not interested in hiring him. I've sent him out to places to obtain a volunteer job, even they don't seem to call him back. There is only two things that he is good at. The first is watching TV and the second is eating. Stan can watch TV for approx 14 hours a day. He can you the name of every channel and tell you everything that you need to about sports or wrestling. We have asked him to reduce the amount of TV he watches. He is very good at deceiving us and will make sure that he does not watch TV when we are around to make us think that he not watching much.

His basic math skills are horrible. He is not able to compute basic numbers in his head. Eg. if I were to ask him what 20-14 is, he'd prob give me the answer of 20.

We would like to help him become independent. We don't want him to become institutionalized once his parents are gone, nor do we want the burden of looking after him for the rest of his life.

We are looking in getting him financial assistance through ODSP, so that he can have some money to take care of himself, but have been told that it is not easy. His parents are not willing to offer any kind of financial assistance to him. We think that if we put him on his own in a small apartment, he would prob be able to do some basic grocery shopping and be able to live his life independently to a certain extent. He will only do things if he is forced or if he has no other choice. We feel that if he is on his own, he will be forced to go grocery shopping if he is hungry.

Can anyone here give me some advice, or perhaps know of some programs that we could get some help from. We are located in Toronto, and are desperate for some help and advice.

Thanks in advance!!

TM

 

[growingup]

Well your post has brought tears to my eyes. Stan is very lucky to have you to take him out of his situation and give him hope. I hope you will succeed in this mission.

The observation of a layman: If he is capable of learning lots of facts about sports, he's probably capable of learning other things as well - if they interest him. In fact, from what you desfribed, he never had the chance to do things he wanted growing up. He was incapable of fulfilling the demands made on him in school and at home, and was forbidden the joy in "playing" as a child. (What a truly tragic story.) He probably has strong resistance to doing anything he believes he "should," including jobs and all. They may be too potent reminders for him. The TV is something he has and wants, because it was the freedom he was denied. All that watching may be making up for lost time.

If he can find something that he really wants to do, he will motivate himself to make progress. Perhaps he could get a job involving television! Maybe helping out a salesman, or something at a local station. Or involving sports. Wherever his heart leads him.

And, I must add, he probably needs an extra amount of love and friendship.

 

[David Baxter PhD]

Actually, although there are degrees of severity with Asperger syndrome as with most disorders, one of the characteristics is that the individual may "excel" and/or obsess about one or two things and yet struggle significantly with learning other things.

Some resources that may be helpful:

ASPIRES: Asperger Syndrome Partners & Individual Resources, Encouragement & Support
aspires-relationships.com - This website is for sale! - aspires relationships Resources and Information.

ASPIRES is an on-line resource for spouses and family members of adults diagnosed or suspected to be on the autistic spectrum. Our approach to one another and towards our "significant others" is directed towards solving problems in our relationship with a spectrum-sitting spouse.

ASPIRES is an e-mail subscription list for individuals with AS, and those who have a parent, spouse, or child with AS. We share our family and relational experiences, resources and survival tips as well as offer encouragement and hope. Through sharing, we hope to lighten one another's burdens and find positive solutions to many of the troubling challenges that characterize our relationships and bridge the communication gap that exists in everyday life.

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The Asperger's Society of Ontario (Toronto)
A resource in Ontario for those diagnosed with Asperger's, their families, educators, medical/mental health professionals and others interested in this disorder. Services to date: an Asperger's specific social skills group for kids 9-12yrs at the Clarke Institute; a research project to test the effectiveness of alternative therapy such as expressive art therapy; a resource directory;band parent/teacher support.

Contact: The Asperger's Society of Ontario
293 Wychwood Ave
Toronto, Ontario M6C 2T6
(416) 651-4037

Asperger's Society of Ontario
293 Wychwood Avenue
Toronto, ON M6C 2T6
Phone: (416) 651-4037
E-mail: info@aspergers.ca
Web Address: http://www.aspergers.ca

The mission of the Aspergers Society of Ontario is to provide education, resources and support to individuals diagnosed with (or considering a diagnosis of) Asperger Syndrome (AS), their families, educators, medical and mental health professionals, employers or prospective employers, government and the community at large, to enable AS individuals to realize their gifts and engage as fully contributing members of the community.

See Current Programs and Services

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There's an interesting article here about the Canadian classical pianist, Glenn Gould, and the possibility that he may have had Asperger Syndrome:

Dr. Timothy Maloney (PhD), the director of the Music Division of the National Library of Canada has written about and discussed the possibility that Gould had Asperger's Disorder, a disorder related to Autism. This idea was first tentatively proposed by Gould's biographer, Dr. Peter Ostwald (MD), though Ostwald died before he could develop this theory; there was no diagnosis of Asperger's possible in Gould's lifetime because Gould died before it was first included in the DSM (the main reference book for mental disorders used for diagnosis in the United States). Glenn Gould's eccentricities such as the pre-performance ritual of soaking his hands and arms in hot water, his rocking and humming, his isolation and difficulty with social interaction, and the uncanny focus and technical ability he displayed in music making can, according to Maloney, be related to the symptoms displayed by persons with Asperger's.

Others, such as Dr. Helen Mesaros (MD), a Toronto psychiatrist and author, dismiss this theory as post-mortem diagnosis based on circumstantial evidence by people without medical training. Mesaros wrote a rebuttal to Maloney's paper and suggests that there are ample psychological and emotional explanations for Gould's eccentricities without resorting to neurological ones.

 

[Stan]

thankyou all for your responses and suggestions. Any other advice will be greatly appreciated.

Some questions I have:

Does anyone know if there are any employment groups or employers who will hire an individual like this....this seems to be the biggest challenge that we have is to get someone to give him a chance?


Does anyone know if there is a specific method that we could use to help him learn to gain life skills or even learn to be self sufficient? We are lost.

He does not seem to understand the concept that people have to work for a living. He feels that he can live the rest of his life, and that everything will always be done for him by others and that he will never have to do anything on his own.

Any comments or advice will be greatly appreciated. I have sent an email to the organization listed above.
thanks
TM

 

[HA]

Welcome Stan,

People with autism spectrum disorders usually like routines to be stable with little variation. For some people this can be the most challenging aspect of their day to day life. They just cannot handle "any" change in routine.

Social skills can be what people with Aspergers struggle with the most. Here is a link that explains the social and communication issues that may answer some of your questions about why he says and does the things he does.
Page Not Found: Error: Indiana Resource Center for Autism: Indiana University Bloomington

Social stories or comic books seem to be an effective way to teach social skills.
Asperger Syndrome

The Geneva centre for Autism is a good resource for professionals and families: http://www.autism.net/cms/index.php?page=692

One of your best resources, Stan, is to find a support group in your area and ask those people directly about programs for employment and life skills. That way you can find something which seems suitable to your needs with less trial and error. They can give you examples of what has worked for their loved ones. If you don't have a local supoort group it would be worth the travel to attend. If you can't find one then call the organizations that have been posted and see if they can direct you to local life skills programs.

As you mentioned earlier, you won't be around forever to take care of him and it would be better for him to learn some life skills while you are around to support him. Start asking about homes for shared living and put your name on waiting lists. These waiting lists can be years long so start soon!

One book that I really enjoyed and which gave me great insight into what it is like to live with autism is a book by Donna Williams titled Nobody, Nowhere. She has since done a sequel titled Somebody, Somewhere

Temple Grandin is another author with Aspergers Syndrome who is very inspiring.

Regarding the ODSP. If the psychiatrist fills the forms saying he is not capable of working (which he is not at this point) then you should have no problem getting ODSP. This is another area where family members who have gone through this can advise you on the paper work. My son was placed on ODSP while in hospital so I never went through the process.

 

[ThatLady]

Another thing that jumps out at me from the picture you present of Stan's upbringing is one of a person who sincerely believes that nothing he does will ever be good enough. Stan has learned that to try is to fail. To me, it is no wonder that he is reticent to try. I think I might feel the same, had I his history.

Perhaps, introducing him to little tasks with short-term, reachable goals, and praising him for reaching those goals, might help him build a sense of success. He will probably be resistant, at first, but once he has achieved a success, further efforts will seem more desireable. There's nothing more motivating than a job well done.

You and your wife are to be commended for your efforts to help this young man find his feet in the world. Hopefully, some of the links others have given you will aid you in finding support for what you're endeavoring to do. Good luck to you, and to Stan!