Slightly hopeful, but mostly terrified

[1 Day At a Time]

I just got back from the first day of a two day autism conference here in town. It's conducted by a local autism group and is really well put together. Last year's keynote speaker was Temple Grandin's mom and she was simply awesome.

This year's keynote speaker was to be Daniel Tamment, author of "Born on a Blue Day", but he cancelled a couple of weeks ago. One of the speakers engaged in this place was a fellow who claims the autism diagnosis , and he stated that he was nonverbal until age 4. He has earned a Phd from Boston University , is currently a professor of special education, and has written several books - one of which is "Autism for Dummies". He was definitely an off beat guy, wearing a baseball cap, dark glasses, very loose clothing, and sporting a full beard. He said that the cap and glasses help him with his sensitivity to light. He was very, very funny - I'd like to see him on Letterman - but his message was extremely thought provoking. (He did a spot on imitation of Tony Atwood, accent and all).He's married, he says for 19 years. He obviously is doing very well, given his early diagnosis and prognosis. I couldn't help but be encouraged by his example - but he's obviously a very unusual individual.

Later I attended a session about the subject vocational planning for individuals on the spectrum. The presenter was an energetic and dynamic lady who has 30 years of experience with working with folks on the spectrum. She did her first work with the TEACCH program in North Carolina. Despite her optimistic demeanor, she had some chilling information to share. Many of the young adults on the spectrum that she works with, just don't make it in the vocational world. The services offered after school ends are limited and brief - and the social deficits of her clients often get them fired . Her audience was special education teachers and parents , and she told us all that we must focus more on social education with our students and children. Many of her clients of graduated from high school, some from college. Some of them were honor students, and some of them were in gifted programs. But , she's not seeing their academic success translate into vocational success.

She told the audience that we MUST NOT tolerate behaviors in our children/students that will not be accepted in the vocational world. She encouraged teachers to develop more social skills training programs for students in middle school and high school, and parents to demand them. She had made a film of interviews with young adults on the autistic spectrum, just interviewing them about their experiences in the vocational world. It was simply heartbreaking...

This is a subject that has been very much on my mind in the past couple of years. difficult child will graduate from high school in May, and while he has been accepted at the local University, I know that he has a very long road to travel to a (much hoped for) independent life. I'm just wondering about the thoughts , concerns, and experiences, regarding vocational issues of other parents out there with difficult children on the autism spectrum. This day has been a very sobering one for me...

Valerie

 

[Fran]

Valerie, there is no doubt that academics is important but our kids social IQ is more important. The statistics I saw 3 yrs ago scared the pants off me. Mostly because they were black and white and no nonsense and true.
It was when I accepted that my child was never going to have a fully realized life if we can't help him find a world where he can be with peers.

I think of the deaf community. They were too often invisible in the hearing world so they created a world where they were on equal levels as their peers.
Our kids need something like Gaullaudet University where our kids could compete and grow within a peer group.
If our kids can't manage in the mainstream world, then let's help them make a world where they are productive, channeled and accepted.

If I can find the study with the statistics I will send it to you. Very sobering.

 

[ML]

This is very thought provoking. I agree with Fran about creating the community of peers. I believe that our world will have to accommodate all of these young adults if no other reason than the numbers of them being diagnosis is astonishing.

 

[susiestar]

It certainly IS sobering. I think of gfgbro in times like this. It has taken until he is 40 and has a child for him to get a "regular job". One he goes to every day, has benefits and gets paid for.

Gfgbro did OK in the army, though he constantly lost rank because he was insolent. Things like rearranging the tool shed with-o checking with-anyone. While his way WAS more efficient, the person in charge of it was not consulted and so bro lost rank. Every time he got up a rung he lost it 5 or 6 times before he managed to keep it for a MONTH.

He worked for the Forest Service in Idaho. did ok some, but it is seasonal work. He is VERY frugal, much like the older relatives who lived through the depression (Obsessive Compulsive Disorder (OCD) about it, actually) but never accumulated savings because alcoholism got in the way.

He actually managed to get his own contract for clearing a specific trail, but is totally incapable of managing his time, so he went way past deadline, mouthed off to the person who inspected it, and had to PAY BACK all the $$ he was paid for the 4 month job. It was a total disaster.

Every year he worked for the forest service he would come to my parents for Christmas and then stick around until late March or even Early May! He did NOT work during this time, even the year Wiz was 18 months and my mom made bro go get an apartment.

Bro found an apartment that should have been condemned. He paid $65 a MONTH for a small 3 room plus bath apartment. He only turned on the heat if the temp was below freezing. And he could NEVER grasp why I would not take my 18 month old child to his apt with dangerous wooden stairs outside, and a freezing interior. Especially when he was drunk every time I saw him that winter.

Bro could never understand how husband worked a 9 to 5 job. After rehab, when he had to stay instate for probation, he opened his own "business" trimming trees and doing light remodeling and home repairs. He couldn't see why he would get insurance for his business, why you don't give every client a low estimate with no wiggle room and then give them a 25% to 40% discount when the job was more involved or something went wrong. And something ALWAYS went wrong. Like dropping a tree limb on the house where his psychiatrist had her offices and our therapist had offices. (We were THERE when it happened, luckily the damage was minimal and no one got hurt.)

Finally, after his divorce, bro got a job doing maintenance at the local college because he HAD to get an income. At that point he was living in the trailer our parents bought on some land for him to live on when he got married. He talks a lot about moving, would like to go back to Idaho. But until his daughter is out of school he won't move. And he won't buy a house because he just can't plan that far ahead.

I will say he finally seems to be having successes at his job. He has been there about 2 years, the longest he held any job ever, and seems to have a boss who understands him.

That is the most successful he has ever been at a job that required him to show up at regular times on a consistent basis for more than a couple of months in a row.

I will say that gfgbro WAS quite accepted and successful the season he went to Antarctica to work as a carpenter for the station down there. I think people who are a bit odd flourish in that environment. Not sure what it says about our kids, but I have often thought that gfgbro could have made a happy life down there. Except that it was hard to get alcohol. Now it wouldn't be a problem nearly as much, but it was then.

I think many of our kids will reach their vocational successes later in life, simply because it takes them FAR longer to grasp the social concepts that are needed for that success.

 

[Fran]

This is located in our General archives.

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

"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.

 

[Marguerite]

I don't fully agree about being so harsh on the autistic behaviours. I feel we need to lead them towards a more 'normal' expression of behaviour, but we need to recognise that autistic people need a lot of these behaviours in order to cope. They CAN change behaviours often to ones which are more socially acceptable, but a blanket "no tolerance" is, I feel, short-sighted and insensitive.

For example - easy child 2/difficult child 2's obsession with furry textures. It was socially unaccpetbale for her to carry a teddy to school in high school, so she made a fur-fabric cow-print cover for her school folder and then carried her folder everywhere. In sewing class, she made a velvet cushion which she embroidered in a range of techniques with gold thread, to demonstrate her mastery. But she took a lot of trouble selecting the black velvet fabric for its feel, so as she worked on the cushion she got a lot of stimulant satisfaction back form it.
In other words, she adapted her stims to ones which could slide past socially.

Now she is older, she is reverting to what SHE wants and to H with society. In the same way Temple Grandin adapted her cattle crush machine so she could put herself in a hold, easy child 2/difficult child 2 wears tightly laced corsets to get the same effect. She wears them outside her clothing, wears them around town usually while wearing rather Goth-looking outfits. The Goth look is, I think, a way to legitimise the corset-wearing. She certainly attracts attention!

Also, the sort of attention she attracts will also attract like-minded people to her (ie other Pervasive Developmental Disorder (PDD) people). She is forming her own social network, a sub-culture of Pervasive Developmental Disorder (PDD)-sympathetic people with similar tastes.

I descsribe our family as having "two and a half out of four on the spectrum". Increasingly, I see it as three. But they are having more success than average, looking at those figures. difficult child 1 is already married. He still needs a carer but his wife seems to know what he needs. IN her own way she has some Aspie tendencies (her mother does, especially!) and he supports her when she is overwhelmed with anxiety. They are a team. easy child 2/difficult child 2 is engaged to be married and currently organising her wedding.

Employment-wise, neither of those two is doing what they could be doing, according to their abilities. difficult child 1 is currently out of work again, easy child 2/difficult child 2, although studying Early Childhood, is still only a shop girl. They have IQs in the 130-140 range.

difficult child 3 was language-delayed quite significantly. He was still partly non-verbal when he started school at 5. He has caught up with his language but simply having been delayed, means that word retrieval is always going to be a problem .There will always be some gaps, even tough his scores are now all within normal range. His vocabulary is superior. But the gaps are frustrating for him and will always hinder him. We are currently working to find him a career path that will work for him.

Social acceptability - it's a goal. It's not easy. They need to learn human behaviour as a zoologist studies animal behaviour. There are some wonderful ways to learn this. difficult child 3 is currently immersed in SIMS. He has been involved in the online forum Gaia, but we found a lot of his communications were inappropriate (not sexually, just not very socially acceptable) so we have discouraged it for a while. SIMS give him the chance to experiment, but not with real people.

I can see amazing things happening for my kids, beyond what we expected early on. difficult child 1 has his blind spots but can be witty, charming, loving, caring and intensely loyal. His friends love him to bits. His employers have all valued his hard work and loyalty.

What I'm saying - there is hope. Every kid is different, but they are decent people who really want to fit in and to please people. Somewtimes its too hard and they want to give up, but so often they come back and try again. We need to support this, lead tham and not pound them into the ground by being too restrictive.

My kids see autism as a two-edged sword. it gives gifts, it has given them abilities that other people don't have. But it comes at a price, they have tp take the good with the bad. They accept themselves as they are but know they need to adapt to be acceptable to other people. However, in the priivacy of their own space, they will happily stimulant if they darn well want to. They feel entitled, if they're alone. It helps them calm down, so they feel it earns a rightful place in their lives.

Marg

 

[JJJ]

I'm pretty sure my boss at work and my boss where I volunteer are both on the spedtrum. They are definitely both difficult children (mostly former). They both are good at the main skill needed to do their job (it is not a common skill) so people work around their deficits for the most part. It is often frustrating but it does show that our difficult children can be successful if they find their nitch.

 

[Fran]

JJJ, I am sure that there are successes out there that were never identified and are not part of the study.
I think more than anything this helped me realize how severely affected our kids are by their disorder and symptoms.
There is nothing to say that if we do something different that our kid will find their niche and success on their own terms.

I am still hopeful but my goals are somewhat altered to fit difficult child's needs.

 

[shad16_12]

I watched a program the other night on TV about a child who was diagnosed with autism. They had home video of him when he was about 4 yrs old. Then for some reason, he started to "recover". He started communicating, talking, understanding, responding...He's now a normal 13 yr old. They are studying his brain to see if they can figure out what happened to make this kid go from autistic to normal functioning. There are changes in his brain that cant be explained. It was pretty interesting but obviously rare. they think if they can understand what happened or why they might be able to use the info to help others.

 

[rejectedmom]

My easy child 2 son is one of those Asperger's statistics. He had interventions all his life from age 16 months. He graduated from HS mainstream (with support) went on to college Advocated for himself and his modifications. Graduated with honors from a well known college with a degree in Economics but cannot get a job in his field because he does not interview well. He now does route sales for a well known snack food company where he works 18 hour days 5-6 days a week to do the same job another will do in way less time. He lives with me and has few friends and no real social life. He likes beer and uses it to drop his social inhibitions and unwind. He didn't drink on work days but he was over drinking on weekends and it was getting out of hand. We worried about his health so husband and I have just done an intervention on him and he has stopped drinking (for a week now). We hope that he will be able to maintain but statistically Asperger's are highly susceptable to alcholism even if it doesn'[t run in their family.

FYI There is a community for the autustic and Asperger's in Montgomery County Maryland. I looked into it a few years back for my difficult child but it was way out of my price range. For those of you with young children I strongly suggest financial planning for their adult years so that programs such as the one I found might be an option. I doubt my easy child 2 would go to one of these communities. His life is very hard but he has his "routine" and he is comfortable in it. -RM

 

[Marguerite]

Kids who "recover" - if you read "Son Rise" the boy in that received the equivalent of intense one-on-one intervention from his parents, and it made an amazing difference. The boy ended up functioning normally, no sign of autism.

But is this recovery? I personally view it as adaptation. That's not to say you don't rejoice when the awful prognosis you were given for your child fails to eventuate. Of course if I no longer had to provide the levle of support and understanding we do for our kids, I would be so relieved and relaxed. But what we actually deal with, is a level of functional improvement (which will vary from person to person) based on how well that can adapt. difficult child 3 describes it as "pretending to be normal". He was 8 years old before we were able to explain to him about his autism. Before that, he didn't have the language comprehension to be able to understand at all; even at 8, it was tricky but we had arranged a Sixth Sense intervention for his class at school and difficult child 3 sat in on it, for the first session. It helped them all understand that autism is something you're born with, it involves deficits in the Social Sense (the 'sixth' sense) and just as with anybody who has a problem with one of the senses (seeing, hearing, touch, smell, taste) you help the person because you have an ability they do not, but apart from lacking that ability, the person is otherwise just like you.

If you have a child diagnosed with autism who at a later stage appears to function normally, that is wonderful. But always be ready for the time when pressure may get too great or something may step in to interfere with their coping skills. That is when you can be caught by surprise. Adaptation is not a cure, it just LOOKS like one.

An example - one of my sisters was brain-damaged in childhood by a very high fever. She had significant learning problems, ended up not being able to finish school, left school as soon as she was old enough legally and was given a job with a high level of support. She had short-term memory problems and simply hadn't been able to learn. She was literate - barely. She had been five years old when she became ill, that was before I was born. So all I ever knew of her, was as someone with problems but otherwise loving. However, she didn't cope with change well and we really had to work to keep her stress levels down.

As she got older, and as her work environment slowly adapted to her and vice versa, she continued recovery. She did a couple of courses and her boss found she was very good at transcribing numbers, so she was given charge of the ledgers. Then she was taught how to balance the books and slowly her capabilities improved. About ten years after leaving school, she got married. He was her first boyfriend, a nice bloke from church. They had a long engagement. After they married they lived near us, Mum was always nearby to talk to her. I think she found marriage very stressful to begin with, but her husband was the tall, dark, strong and silent type, she felt safe and protected.

They didn't have kids for another five years, but having a baby was a HUGE change for her, and she went t pieces. By that stage she seemed perfectly well, mentally. She had recovered to the point where she was keeping the books for the business, managing the branch store all on her own, supervising staff - she was doing brilliantly. But first baby - she was a mess again. She was on maternity leave, so she didn't have to worry about work as well as baby, but she came home for a couple of months while Mum got her head straight again.

My sister is doing brilliantly these days. She is now a grandmother several times over. She continued to get stronger mentally, she went back to school and completed formal qualifications. She is now a qualified accountant. Her caring, loving husband - the strong silent type turned out to be someone who was not capable of prooviding the moral support she needed, and so she HAD to learn to stand on her own two feet emotionally. One day she realised the marriage was over - she no longer needed him. It as very sad for him, he had done nothing wrong. Neither had she - she had simply, finally, grown up at last. She was 40 and had finally realised she was recovered and no longer mentally a child.
The divorce was a bit messy, but they are now friends. She has remarried, so has he.

My point is - we thought she was doing well and had recovered, at a number of points in her life. But recovery for her has been an ongoing process. When our parents were dying, she HAD to be there at their side (I couldn't get there, I was resigned to it). She had to be very strong (not like her as she had been) and took on a lot of caring. It was stressful, but she handled it. But still, sometimes, when something sudden or drastic happens - she begins to lose it and someone (usually her current husband these days, or her twin sister) steps in to talk her down from her panic. Each crisis she has had to deal with, has made her stronger and more confident.

When I look back to how far she has come, I am amazed. But when I look at her and then at her twin, I can see the remnants of the problems still there.

Anyone who knows her, but not the history, won't realise there has ever been a problem. But WE know. And we look out for her.

On the topic of kids who need support even as adults - I'm again looking for a job for difficult child 1. What has worked for us, because he really doesn't present well, is getting pushy. I know difficult child 1 can make a bad impression at interview and he's hopeless at making appointments for himself and trying to organise himself to do courses, get to an interview etc. SO I've done it. There mere fact that Mummy is making the call for him, can put people off. Often we've been told that there are no vacancies, when I hear independently that they are still looking.

So here is what we've done - I call the place, I tell them that difficult child 1 has Asperger's Syndrome which can give them the impression that he doesn't fit in. But there are positive advantages to having an employee with Asperger's - he is honest, loyal, trustworthy and when given a task to do will do it to perfection. He may need extra support initially when learning how to do something, he may need instructions and steps written down initially also. But he is very, very smart.
Often at this point they say, "We have no vacancies at the moment."
Thath's when I say, "That's OK. But he really would like to get a feel for what it would be like to work in this industry. So please can he come and work for you for nothing for a couple of days, just to see if this really is the career path he wants?"

Very few employers will knock back the chance of free labour. And what happens - they get to know difficult child 1, they get to see him working and get a feel for what he can do. If nothing happens after two days and they still don't ant him to work for thrm, that's OK. He can say to the next person we apply to, that he has had a couple of days' experience working in the industry and liked it. And we try thr same thing again - "give him a couple of days' working alongside you for nothing, see what you think and any advice you can give him on his prospects, he will be sufficiently repaid."

I have to negotiate this for him because he is really bad at negotiating on his own behalf. But this is what has worked for us, when for months and months, nothing else was getting us even to interview stage.

If a prospective employer asks why I am making the calls on his behalf, I do have to say, "He isn't confident telephoning people he's not met before. Once he's in a routine and feels confident in what he's doing and who he works with, you wouldn't notice anything unusual. But this is a disability, it has hampered his chances up until now which is a shame because a lot of employers out there don't know what a gem they're missing out on."

I play the card that says, yes it is a disability, but it also has some aspects to it that an employer can find very much to his advantage. Just as someone who is colour-blind is an asset to counter-espionage and military intelligence, so someone on the autism spectrum can be exactly what the job needs, in a number of professions.

I have my script ready for each phone call and I make it clear - I won't be fobbed off, not until they have met him and given him a go for free. I also make sure he does volunteer work while he's unemployed, so he's not sitting on his duff feeling sorry for himself. The volunteer work goes on his resume.

We're also lucky that difficult child 1 belongs to an agency that places people with disabilities into the workforce, and supports them professionally. We've been very glad of them. I work with them to help further.

Marg

 

[1 Day At a Time]

Thanks to everyone ! You all have given me more food for thought. Fran, thanks for reminding me of the Quality of Life study. I had seen that earlier, but I don't think I was really ready to digest the information when I first saw it. The seeds are falling on fertile ground for sure now!

I do believe that it takes many folks on the spectrum extra time to pass through the developmental stages. They are just dealing with so many sensory issues and problems with initiation of actions, that they take so much extra time. But with our difficult child it seems to be more than that. He's not interested in independence. He told his dentist a couple of weeks ago, that he never planned to leave home. She thought that was humorous because her son, who is much younger always says the same thing. But what is normal at 10 is not so normal at 17!

Marg, I think that your approach to , and assistance with, employment for difficult child 1 is awesome. I believe this is this extra effort required to help our difficult children attain and maintain employment. This assistance can be obtained here in the states through governmental programs, through private pay groups, charitable organizations, or personal effort like your own. I'm reaching the understanding that this will be a lifelong process and will more than likely always be necessary. difficult child got his diagnosis a year ago, so these are all new ideas that I am having to understand and incorporate. husband definitely is not there yet! I think he still truly believes that this is something that difficult child will "grow out of it".

I went to a session on estate planning for children will autism. It also was quite eye opening. I have decided to meet with a financial planner and an attorney in the next few weeks to start putting together a plan for difficult child after husband and I are gone. I probably will be speaking with easy child next week to see if he will agree to be an executor and trustee. Big decisions, all the way around!

Valerie

 

[Fran]

There are programs here in the states, where they provide the employer with tax advantages and free employee. The government subsidizes the salary.
It seems to be based with vocational programs.

I'm grateful that there is progress in how we help our kids but we have a long way to go to establish a program that helps our young adults have a full a life as they want to have. They are too isolated socially and vocationally.