AS/Pervasive Developmental Disorder (PDD) adults Quality of Life Study

Discussion in 'General Parenting Archives' started by Elise, Jan 5, 2005.

  1. Elise

    Elise Active Member

    "The largest study* ever conducted of high functioning adults with Asperger's Syndrome and Autism was completed in 2001. The researchers followed hundreds of young adults on the autism spectrum who had high IQ's and good language. 50% of these bright individuals went on to higher education after high school. Yet, at the time of the study:

    Only 12% were employed

    Only 3% could live independently

    Over 65% had almost no social contact outside of their family

    None were married or involved in a significant emotional relationship

    Over 75% of children currently diagnosed with an Autism Spectrum Disorder (Autism Spectrum Disorders (ASD)) have at least average intellectual potential and adequate language development, placing them on the "high functioning" end of the spectrum. Yet, as this and other studies clearly demonstrate, their academic achievement and language proficiency are not sufficient to attain a quality of life. Despite significant progress in evaluation and treatment of ASDs, the prognosis for quality of life for people on the spectrum remains poor.

    Yet the myth that language and academic achievement equals success continues to be communicated even by some "expert" professionals.

    * National Autistic Society (NAS) of Great Britain.

    Findings in other studies conducted in the US, Ireland and Sweden have produced almost identical results".

    I hope the interventions we are trying on our children produce a more favorable outcome.

    Elise
     
  2. sameold sameold

    sameold sameold New Member

    Hi
    I have been having such a hard time recently with all of this, you keep hoping and dreaming that some day he will be able to do this and that. But recently my hopes are dwindling. He refuses to do hardly any chores, yesterday he was to put the laundry in the dryer from the washer, he forgot which one was the dryer!!and than he put the dirty clothes from the basket in the dryer, he corrected himself right after, but I just wonder what is going on. He is a great kid but has major Sensory Integration Disorder (SID) so hates to even move. We have lots of supports in place but no one can make any progress with him, and he will be 18 in the spring. I am so so frustrated.
     
  3. OpenWindow

    OpenWindow Active Member

    Your post gave me chills.

    We work so hard for our kids, hopefully the next study will be a bit more optomistic. Maybe this will get people to realize we need to do MORE to help these kids not just with school, but life skills in general.

    After the night and morning I had with my son I don't see how he'll ever function in a normal world. But, he's only 8 and I have to hold on to hope.

    Linda
     
  4. Fran

    Fran Former Site Owner

    :grief:
    Elise, it broke my heart to think that our kids live a less the full life because we have been unable to teach them the social skills end,the coping parts of life, the judgment part of life.

    My son has a lot of potential but he needs the right environment and the right supports to blossom. He also needs nudged.
    I know that when he was younger I looked at what the future held and felt such despair. I didn't really follow what was the common teachings of the day.(not that there was much)
    I followed Temple Grandin's mom. They kept their child as close to her peer group as possible. Reasonable expectations as far as behavior at home such at manners, interaction with family,behavior.
    Intellectual stimulation of what interested difficult child even if it doesn't seem to be something I can understand the purpose.
    Wide tolerance for eccentricity within acceptable range.
    Understanding not everyone needs or has lots of close friends.
    Insisting on a certain about of behavior that was normal. By that I mean if difficult child doesn't show enthusiasm for something(gift for example) that he is to play act until the time when he is free to show his real emotions.

    In addition, lots of role playing and cuing him as to what would be expected in the next "scene" of our life.

    Turning situations around so that I put difficult child in my role as a parent. What would he feel or do if he were the parent and his child was doing x,y,z.


    There is no doubt that our kids need to learn skills to lead an independent life.
    My difficult child was 7 or 8 before he got that that noise ringing was a telephone and the action required was pick it up and say hello. It wasn't an important part of his life. Now, his ear is permanently part of his cell phone. He had to learn that the phone was a tool that can help him. He calls when he is lost or has a question.

    The thing with laundry and cooking and budgeting have more relevance as they need them. The rote learning doesn't work for my son.


    I must say that this study doesn't fill me with hope but you look to the child and do what he needs regardless.
    husband and I figure we will spend a huuuugggggeeeeee amount of money and he may only achieve a minimum wage job. Does that mean we should have just invested it so that he has a trust fund to live off of? Maybe, but I couldn't let him not have the same chance at a life as his peers.

    Gosh I hope these statistics are not reflective of my son or any of our kids. :grief:

    So when, Aspies protest that they aren't interested in being cured and we are forcing them to conform, where are these sorts of statistics?

    This is very unsettling.
     
  5. KateM

    KateM Member

    This study is indeed unsettling.It is apparent that more services are needed for the adult population to ensure that appropriate job placement can be achieved.

    I am happy that in our area there is information and support groups available for both adults and families of adults with Aspergers.

    Also, with all the social skill training and other interventions we've put in place as these kids are diagnosed earlier, hopefully our kids will have a brighter future.
     
  6. seattlemom

    seattlemom New Member

    KateM, I have to hang my hope on what you posted. We are getting our children diagnosed earlier and into social skills and other training earlier. Here's to hoping that all of our (and their) hard work will mean a higher rate of success in future studies (and in thier lives).
     
  7. Fran

    Fran Former Site Owner

    If it is any consolation to those of you who have children younger than my 20 yr old, he has held a job, learned to drive(big one), lives in a dorm, has buddies, and had a serious,emotional relationship.
    It can be taught. We practiced, and trained and took a long time to get to the point of him being able to do it himself. In each of those categories.

    I have to hope that this is where we veer away from the norm. We are not insulating our kids but having expectations that they will do what their peer group is doing with accomadations. It's up to us to make sure they are prepared and then caught when they stumble. Then of course, we push them right back on the horse they fell off of so they aren't afraid of trying.

    Our kids aren't statistics or labels. Some of our kids will do better and some won't. Let's hope we are going in the right direction.
     
  8. 'Chelle

    'Chelle Active Member

    Reading studies like these always makes me worry a bit more about difficult child's future (like I don't already :rolleyes: ). As mentioned, our kids have had many more interventions than those in the study probably received, and they can be taught the things they need to know to function in society, even though it may take teaching them over and over until they "get it". I look at how far my difficult child has come in the last year alone, and I have higher hopes for him than I did just a year and 1/2 ago.
     
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm an incredible realist and a bit of a pessimist. That's why I plan for a group home setting or apartment with social worker checking in (and I think that won't be possible---not enough support) for my Pervasive Developmental Disorder (PDD)-not otherwise specified son. He will not go on to higher education as he can't even do mainstream work in school without an aide at his side and homework is out of the question. He doesn't understand how to do research on a computer or how to find a book in the library. I am not upset by this. It validates what I've been told and, in the event that it happens that he needs assisted living, I will be prepared and my grown kids will be prepared to take over overseeing his placements when we're gone. My closest friend is a social worker at our county social services in Disability and many of her clients are high functioning autistics. ALthough not all will not be dependent, mine will grow and leap and take off, but his life skills, and understanding of life, are so "off"---he is so oblivious to important things---that he may always need a "parent" to prompt him to do the things he needs to do. His teachers envision him working at our local workplace shelter for people with disabilities and, at this point, so do I. We are lucky we live in an area that has such good facilities and the school will help plan with us when he is in high school. If he exceeds expectations, that's great, but we always want to have a backup plan. Our neuropsychologist told us most kids with Pervasive Developmental Disorder (PDD)-not otherwise specified can not be independent. Since Pervasive Developmental Disorder (PDD)-not otherwise specified is not Aspergers, and the Aspie kids I know are far better in school work than my son, I know nothing about how they do as adults. Some do marry and have good jobs! That I do know. My son is clearly not an Aspie. As long as my son is happy (and I've said this before) I don't care if he needs assisted living, yet he is being pushed to his maximum ability. For me, quality of life for him is whether he is content and, unless he changes a lot, he is content with life and will adjust well to a group setting. He does not seem to be aware or caring that he is that different and does not seek out peers to spend time with, and all our effort in that regard has been wasted as he is happier playing alone. He has an IQ of 107, but has very low Executive Functioning Skills. I do not consider it a failed life if my son needs help into adulthood. The only way I'd consider it a failure is if he were miserable. So far he is a happy person who is different. He can do the social stuff---he knows please,t hank you, talks well, etc. but doesn't like conversations and nobody can make him have them. He is surface friendly and seeks kids out for board games and basketball at recess and is friendlier than many autistic kids, and he can cook without burning down the house and he is very good natured (big plus). He can answer a phone. He "gets" what things are for, but he isn't interested. He WILL like to work at a rote job...he loves to help. Yet anyone who knows him realizes without my saying a word that he is kind, sweet, and different. Many have asked me if he is autistic and I've never told them first.

    He *is* the sweetest person on earth and my true Gift from God. How do we judge "quality of life?" If our kids are content the way they are, to me that's a good quality of life. Just because WE wouldn't want to be that way, doesn't make their life quality poor, in my opinion. Please remember this RDI is an ADVERTISEMENT for their stuff, and perhaps they are swinging a bit negative to get us to try their things? Just a thought.


    I thank you for the article. I eat up everything I can on Pervasive Developmental Disorder (PDD)-not otherwise specified. I was told, by the way, that my son was moderately functioning autistic, not high functioning. He is sort of in between. (((Hugs))) to all parents.
     
  10. transformtriumph

    transformtriumph New Member

    I know of a young man who managed to get a PhD but cannot hold a job. He is currently working part-time in a food bank, bagging food. Even with special coaches, he cannot manage all that a job entails.
     
  11. Elise

    Elise Active Member

    Good point, Fran.

    I wonder if the group of high functioning adults in the study want to be cured? Are they happy with their lives?

    Is it possible to live at home, have no job, no friends and be happy? Or is this why depression rates are so high in the Pervasive Developmental Disorder (PDD) population?

    Elise
     
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Actually mood disorders are at 30% for Aspergers, but they aren't caused by the Aspergers as disorders like bipolar are genetically passed along. I'm sure those who want to be "neurotypical" would be depressed and lonely. Sure makes sense to me. I'm almost glad my son isn't an Aspie. He does not seem to care that he is different or even be that aware of it. Some Aspies are good at teaching themselves how to behave typically so that they can try to fit in. Here is a site (discussion board) with Aspergers adults talking on it! You need to type "no thanks" when the little icon page comes up, then the site is right underneath it. Good reading!
    http://forums.delphiforums.com/aspies/messages

    You have to join Delphi forums first than go to this site. It's interesting. The posters are adult Aspies, all independent.
     
  13. Fran

    Fran Former Site Owner

    Elise, I don't know about the depression rates. Truthfully, this is secondary. Whether they are happy is really secondary to survival skills.
    Living at home will come to an end. Having no friends/ social life or job is important to survive for people at a certain level of functioning. I know that my son will not be happy being bored. To keep stimulated one must learn,change,grow, do new things. None of that is conducive in a life where nothing changes. Your life at 40 is the same as it was at 13.
    I consider my push towards difficult child being the best he can be as a need to help him survive. When he gets to the point that he has maxed out his potential or tolerance then we will see where we have landed. Reaching too high is better than reaching too low.

    Living at home with no job or social contact may be an end result but he sure wouldn't be happy with it. He will be miserable and make our lives miserable also.

    I may be in serious denial(which I don't believe I am) but I'm not ready to apply for disability for him. I just can't wrap my head around that he won't be self supporting. It may not happen until he is 28 or 30 but I am not ready to send the message to difficult child that I think this is the best he can be. I see the light bulbs going off when he "gets something" for the first time.

    I know we have talked a lot about this, Elise. Anxiety was a big reason for my difficult child's rage and for his refusal to try things. His feeling of being unsettled set him up to fail.
    As difficult child is finding more success, he seems to have less anxiety. As he uses his problem solving skills and having success solving problems, he is less anxious. As he tries the tools and finds success, he starts to work out the anxieties a bit more. Hopefully, setting him up with a safe person and tools to fall back on, has given him the space and time to grow those skills that younger kids start to grow in adolescence.

    My friend with a son like mine, asked "Would want to be married to someone with Asperger's?" Hard question to answer.(certainly would depend on the degree of hygiene)

    So to answer your question Elise, I don't think my difficult child will be happy settling for less than what his peers have. I think he will be perfectly happy with less money, education and friends but he has to have a part of all of that to be the whole person he is struggling to be.
     
  14. Fran

    Fran Former Site Owner

    FYI., I asked difficult child your question Elise.
    difficult child said No, he wants a life. (guess he doesn't think living with mom is a life. :laugh: He used to think that was good enough until he fell in love and got friends)

    Mom doesn't think living with her sons forever is a life either. It isn't what nature intended.
     
  15. MplsSusan

    MplsSusan New Member

    Fran, I'm so happy to hear difficult child's response At 14, mine still thinks he wants to live with me forever.

    It's a depressing picture. I have my fingers crossed that all of these years of intervention, teaching, cajoling, advocating, etc. will someday pay off. The people in the study Elise cited didn't have the benefit of everything we know today. And we know so much more than we did when my difficult child was diagnosis'd five years ago.

    My difficult child is quite outgoing and sociable and tries hard to make friends, even after years of rejection. He is finally getting a little bit better at it, and I can say with some confidence that he has "buddies" at school. He does feel pretty good about that, and I hope that feeling of connectedness to other people takes root and continues to grow.

    Will he ever be organized enough to live independently? That to me is a bigger question. I don't think it would ever occur to him to do laundry or wash dishes. He might starve to death waiting for clean silverware to materialize out of nowhere!
     
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    MplsSusan, that's my main concern, along with being able to support himself, remember to pay the rent, change his clothes or do things that others do all the time. Budgeting is another problem. I hope my son can get there and yours too, but we have our backup plan in place just in case. There is no way we want our son to live with us beyond 18. He would do very little....we at least want him in a setting with people other than family, somewhere close where we can visit him a lot that push activities. That's our first choice for him if he can't be independent. Maybe he'll peak late, live in a group home a while and get independent at 25. We all just sort of have to see. My son says things like "When I have my own house...." because his older siblings do, but he really has no idea what it entails to buy one. Mostly he lives in the here and now.
     
  17. Elise

    Elise Active Member

    I really appreciate your posts. My difficult child has also asked me if he could live with me forever. He said he never wants to get married or have kids but he would be too afraid to live alone. We discussed roommates.

    I don't think any child fully spreads their wings or realizes their potential in the safety of their parent's home. They always remain the dependent child.

    Fran, I'm so glad your son has the desire for a full life. I hope the rest of our boy's get there some day.

    difficult child left for school in full tears and anxiety mode this morning. He's almost 12 years old and can hardly leave the house for school. We have a very long road ahead of us.

    Elise
     
  18. Fran

    Fran Former Site Owner

    Susan, so nice to see you.

    My husband's apt. before marriage would not exactly fill a mom's heart with pride. Guys live like slobs. (well not all) He functions very well but he isn't neat.

    My son doesn't want to learn to do laundry or clean dishes but he is getting prepared for living in an apt. We talked about things to make for dinner. He does have classes on food prep.

    difficult child didn't really get why he should leave home for school. I nudged him a bit. Built a bit of a security net. Gave him an out if he hated it. (finish one whole semester)

    Now, he has a posse of friends and a "past" with old g/f. Taught him a lot about the needs of g/f who was very needy.

    He almost failed. Pulled it out at the last minute and hasn't even hit the ground this year. He is doing great. Even reached out to a younger, new student who was home sick. Included him in the "posse" and now life is good.

    Don't know about the statistics. I'll help my son as long as I can and he will let me.

    Elise, so much anxiety eased up after puberty. I hope it is the same with your son. I know your family has really struggled.

    Sue-FYI, I asked difficult child at 16 yrs old if he didn't want to learn to drive. He turned and said"what for? isn't that what you do?" That's my boy. Why change what works? No vision into the future.
     
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