Autistic high school students fall into two basic catagories to me. The students that are enrolled in regular education classes with special education assistance and accommodations, and then the students with autism plus mental retardation or such sever deficits that fo the most part spend every day in a life skills, basic skills, special ed classroom. These two groups do have very different futures ahead of them. Which group will your student fall into?I have heard that when many aspergers or HFA kiddos get through the dark cloud of early childhood and blend in well with typical kids in middle school or beyond..having friends, succeeding ect.. that parents leave the autism world behind for good. I can relate..I have been living and breathing autism for 4 years now and if I got to where she was indistinguishable and succeeding it would be hard to all consumed like I am now...not sure we will ever get to that place but it is my dream for her. I am always gonna worry about her though:)
Nick is 12 right now, and my biggest worries are mostly about what his life will be after high school. Will he be independant, will he be able to hold a job? Will he have a family of his own? Whats life gonna be like if he can't do any of those things? What happens when mom and dad are no longer here, how will I be able to provide Nick with everything he needs? Those are the major worries i have about the future.
I am at peace with who he is and have stopped beating myself up for not realizing early that it was autism and we missed all those important early years when he could have been getting therapy. The important thing is that Nick is loved. Loved for who he is, not what he has. I know that much. Hope this helped.
~Wendy~
Wow - that's a very interesting observation!
I worry about Dorian's future. He is going to high school next year. He has an aide and has very little self control. I worry that he will hurt someone, steal something, or run away. He's not a little boy that I can protect. Daycare is harder to find, and he cannot stay by himself and is too young for adult programs. The school thinks he college material, but what job will he be able to keep if he comes to work dirty and stinky, splits on his hands, pulls his hair out, and stomps and slams things when he gets angry?
As part of high school, he will have a coping class everyday. Will he learn and model new behaviors? Will one class for one semester help? Will he finally see the light? Can he even control his behavior? What happens if he loses his aide, gets suspend from school? Will someone sue me for something that he does?
What happens to him at 18? I DO NOT want him to live at home as an adult, but where can he go?
i am 15 years old foxi
Right now my biggest worry is getting him through school, he talkes like an adult, so people think he should be able to behave. He dosen't understand people and takes things the wrong way. Has a terrible temper, and if embarrassed he feakes out on them. He is pretty smart, about facts and history , but has splinter skills on all other subjects. So at school they have a hard time getting him. HE is 12 an Aspie and is going to middle school next fall. I'm scarred to death. I don't even think about after school yet.My son is 12, and I worry about his future every day. He's starting middle school this fall.
I worry that he won't have friends (he's only had one real fried). I worry about people making fun of him. I feel sad that he will probably never drive a car, go on a date, get married, hold a job without assistance, live an independent life. I worry about who will take care of him when his father and I are gone (this is my biggest worry). I'm sure our DD (who is 19 months older than him) will look out for him, but I don't want to burden her for life with this, although she may do it willingly. It just makes me very sad to think about the future. I try to live day to day....My son is 16. His dx is PDD-NOS, but it is clear that he will not lead a typical adult life. I have made my peace with that. What I worry about the MOST, is that when my husband and I are dead and gone (not unlikely in the next 10 years, tho I certainly hope to live at least another 20), there will be no one to hug and kiss and love him. My dearest hope is that he will meet another developmentally delayed young woman who will want to be his Life Companion (with assistance from Adult Services, if necessary). I will not rest easy in the Great Beyond if Jamie does not find love as an adult. I can live without anything else. He has no siblings and his cousins are way older, live far away and have really no relationship with him. It's just the three of us, and two of us are likely to predecease him by decades. I try to plan his future based on knowing I want him to find his place in his world, wherever and whatever that will be.[QUOTE=cocoa]Autistic high school students fall into two basic
catagories to me. The students that are enrolled in regular education
classes with special education assistance and accommodations, and then
the students with autism plus mental retardation or such sever deficits
that fo the most part spend every day in a life skills, basic skills,
special ed classroom. These two groups do have very different futures
ahead of them. Which group will your student fall into?[/QUOTE]
But... what school someone is enrolled in has nothing to do with
anything. There can be mildly disabled kids in full-time special ed
and severely disabled kids in full-time regular classes. This is sort
of like when people think you can tell how disabled someone is by
whether they live in a group home or large institution or on their own,
and you actually can't because you can get the same levels of
assistance in any of those places.
I was in regular school and then full-time special ed, and probably
belonged in a life-skills class but was not in one. (Except the ADL
program in some of the institutions I was in.) This was because I
had the academics but not the life skills (this is common in
autistic people and it does not require an intellectual disability to
lack life skills, moreover most autistic people diagnosed with an
intellectual disability don't actually have one).
So now I live in an apartment receiving a good deal of assistance every
day. Like nearly every other developmentally disabled person in my
state because we have almost no group homes and no large
institutions so this is where pretty much all of us live
regardless of severity of disability, you can't tell anything by where
we live either.
[quote]I worry that he won't have friends (he's only had one real fried). I
worry about people making fun of him. I feel sad that he will probably
never drive a car, go on a date, get married, hold a job without
assistance, live an independent life.[/quote]
Lots of people don't do those things (and anyone who thinks they live an independent life is fooling themselves), and most of those things are not things I think are extremely to be worried about or feel bad for someone about. (Not having friends when you want friends, and people making fun of you, is the only one I'd say is really unpleasant.)
I am almost 30 years old now and for the most part my parents still worry a
bit that I don't have a drivers license and may not ever get one and as a
result even though I am mostly independent. I live on my own, work full time
etc. I am not completely independent due to not being able to drive but
other than that my parents don't really worry any more. I'm fine most of the
time.It seems ike a lot of the post are about the essential worries: Will our kids
be fine? Are we doing enough? Are we doing too much? What will the
future look like?
Perfectly normal questions when you have a kid that faces challenges that
are very different and no clear path of how to overcome them or if it is
possible to overcome then. So of course this board is loaded with free
floating anxiety.
I also noticed that most parents on this board are either fairly new to a
diagnosis or that their kids are still pretty young and we are roaming
around for possible therapies and answers.
So where are the parents of teenagers and adults with autism? I know
there are a few here (so thankful for you guys) but for the most part we
are parents of young kids. Does that mean that most parents at some
point find peace and stop looking and spending their time on boards like
this? It seems like parentel anxiety has to lessen over time or you'd just
loose your mind.
What are your essential worries if you have an older kid or adult kid with
autism? Are you more at peace? Plum worn down? Anyone with older kids
willing to share or know of a forum where I could snoop? i have a twin brother that is autistic. i worry about how he will fit in with society as he gets older. i always wonder if he will get a job, will he get married, will he have kids. those are the thigs i wonder about my twin brother. i also wonder if there is anything i can do to help prepare him for the real world....
jodi, how old are YOU?
Micki, it may be partly b/c people did not join boards so often, 10 - 15 yrs ago - -so why bother now?
Or, perhaps they really do NOT feel the need?
I agree with GTTO about NO ONE living independently. Human beings are hardwired to be social for our very survival. Anyone who thinks they don't need/want others is fooling themselves.
To comment on an earlier post, I agree that there seem to be two broad categories of HS kids (and this applies to all disabilities, not just to autism). Those who are going to get regular HS diplomas and need to "live" somehow with the main population of the HS, and those who, like my son, will get IEP diplomas (which are not legally diplomas but really just certificates of attendance. For example, an IEP diploma will not qualify a person to take the Civil Service Exam). Mental Retardation can be a factor, but I know MANY MR kids who are getting regular HS diplomas and who are getting regular jobs and who will most likely marry and raise children. I also know plenty of ASD students without MR who are not (my own son included). I know plenty of ASD students who are BRILLIANT academically and are forced to lead VERY excluded adult lives and are unhappy about that (not to mention that their parents are not too pleased, either). I know some ASD adults who lead excluded adult lives happily (tho none of their parents are happy about that). The ONE thing I DO know is that I have yet to meet an ASD adult who isn't unhappy about their lack of social skills and exclusion when they don't WANT to be excluded. I can't emphasize enough how getting good grades, passing high stakes tests, knowing everything there is to know about a subject, is worth a hill of beans if that student can't also make successful social connections. I just met a woman yesterday (her story is identical to many I've heard already) whose 38yo Asperger's son, who has a college degree, can't keep a job and can't get SSD or SSI because he's earned just enough money in jobs over the 20 years since he left HS to be disqualified as disabled enough for help. Yet he can't live on his own, can't earn a living, can't make a friend, can't find love. This is a situation that is PERVASIVE among today's high functioning autistic adults. I know many on this board have objected to the stat (the origin of which I no longer remember, but it's somewhere in the old posts here) that 92% of adults with Asperger Syndrome are unemployed or underemployed. QUibble about the number if you want, but the fact that the OVERWHELMING MAJORITY of AS adults are in this situation cannot be disputed. Every single one of the many I personally know are in that situation because they were given tons of academic help by the schools and by their parents but NO social skills assistance. Even with social skills help, the disability sometimes prevents them from fully functioning, socially. But without this sort of help, they are lost. One option is for them to fall in love with an NT person who is willing to be their social partner in life (some of the married couples on this board, who are parents of ASD kids, fit this description). Short of that, they are on their own. What I am HOPING is that the new generation of ASD kids won't have this happen to them because the adults in their lives (both family and school ) will RECOGNIZE that social/emotional/behavioral development is far more critical to these kids than the 3 R's. The truth is that MOST of the mildly MR population I know (and I've know HUNDREDS over the years through my son since he seems most successful in classes with mildly MR kids, eventhough his IQ is dead average) do WAY better in the "real world" than MOST of the ASD kids/adults I personally know (and they number in the multiple dozens, at least). I want to shout from the rooftops to parents who hope their kids will live fairly "normal" lives, GET YOUR KIDS THE SOCIAL SKILLS THEY NEED AND STOP CONCENTRATING SO MUCH ON THE ACADEMICS! I know that this is not made easy by the schools. We all must try to figure out how to do this anyway. I know none of you want to be a 65 yo woman (or man) still trying to help your 40 yo 130 IQ son find his place in the world (in the meantime, providing for him financially and in every other way that you are NOW providing for him).
I am not saying there is no hope or the future is dark. Far from it. What I am saying is that, if you want the future to be bright, concentrate on social skills in the IEP. And at home. ALL THE TIME. Do whatever you can to figure out how to drag your child into the world of typical kids. Sometimes that might make your child temporarily unhappy. Some ASD kids may NEVER want to be doing what their peers are. It may be possible to help your child overcome the lack of social skills and the lack of social desire (if that exists with him). It may not. But you must try. Formally and informally. Step back and look at what, exactly, is separating your child from the normal experiences kids his age have. Try to give him the tools and motivation he needs to eventually get those experiences. I am not saying this is easy for anyone -- parent, teacher or child -- but I'm saying it's what we HAVE to do to avoid that 92% stat. We may not be successful. I have not been with my own son. But he is WAY more social and functional that he would have been had I not tried. And I will keep on trying until the day I die to leave him with the skills HE needs to lead a life that makes HIM happy. Whatever that life might be.
I just want to say thanks to Tzoya for the social skills push.
Adam has a low average IQ. Perhaps 90. But as you all know, it is hard to test. But he has Zero social skills even with his brothers. They tolerate him, but when he trys to play with them he ususally does things he knows will bother them, just to get their attention, then they get mad and won't play. He has no desire to learn to be social, or at least until recently. He goes into panic mode, if you even mention a friend, or doing something with someone else. His Psych has been pushing him on this subject. The school wants him to go to summer school for academics and she has said no, he needs to be in a social skills group. That is more important. I am happy she has pushed both of us. Tomorrow we have an appt with a new psychologist that runs a group for boys twice a week during the summer to help with social skills. She told me that it is way more important right now then academics. With help Adam is getting bascially C's in mainstream classes. But like Tzoya has said above. What good are academics if you can't function at a job?
Several people have recently asked how soon they should start social skills training, or how much. I say it is never too early, and push as hard as you can. I know now, that I wish I would have pushed Adam sooner. He is almost 13 and it is far more difficult for him now then it would have been when he was younger.