Autistic kids can be helped

[Sheila]

I saw a 60 Minutes segment last night re: a doctor researching and trying to establish criteria for diagnosing at 12 months of age. It was encouraging. If you missed it, I believe it can be viewed at: http://www.cbsnews.com/stories/2007/02/15/60minutes/main2483414.shtml


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http://www.usatoday.com/news/health/yourhealth/2007-02-18-your-health-autism_x.htm

Autistic kids can be helped

Nathan Katzman is a 6-year-old Rhode Island boy who goes to kindergarten. He loves goofing around with his three siblings, playing on the computer and taking long hikes with his family.
In other words, Nathan sounds like an unlikely subject for a newspaper column. But I'm writing about Nathan today because I wrote about him once before, in 2003, when he was 2 and was diagnosed with severe autism.

The 2003 story was about how some children with autism were being diagnosed at younger ages, amid hopes that early intervention would allow them to reach their fullest potential.

In the story, Nathan's parents, Nicole and Gary, described a child who "screams when he is frustrated, spins in circles to entertain himself and bangs toy cars against the wall." Despite glimmers of progress, Gary feared a future in which Nathan "never really talks and is always the way he is now: infantile."

That was the last I heard about Nathan until a few weeks ago, when I got an e-mail from his mother. "He has made amazing progress," she wrote.

I called Nicole and heard what she and her husband say is a story too seldom told. It's the story of a child with autism who gets the help he needs and makes thrilling gains — but is neither cured of his autism nor revealed to be an autistic "savant," wowing the world with musical, mathematical or artistic genius.

"You don't hear much about the Nathans of the world," Nicole says.

Nathan, she says, isn't composing symphonies and does not entirely blend in with his classmates. But thanks to years of intensive speech, behavioral, play and occupational therapy — and an intelligence his parents suspected from the start — Nathan is doing things they did not think possible back in 2003. Among them:

•He rides the same bus as the other kids in the neighborhood and attends the same kindergarten, with an aide. (He goes to a special-education class for half a day, too.)

•He reads and writes and shows a talent for math.

•He talks. Though he does not keep up a long conversation, he can ask questions and tell his parents what he wants to eat, where he wants to go and more. "About a year ago, he said 'I love you, Mom' for the first time," Nicole says.

Gary, a cardiologist, says simply, "He's a very loving boy." He speaks proudly of the day the family was out hiking, an activity that seems to calm and center Nathan, when their son saw another child fall along the trail: "Nathan walked over and said, 'Are you OK?' "

It was a nice show of empathy for any young boy, but it was a true sign of growth for Nathan.

Nicole says Nathan remains "mildly or moderately autistic," though he is considered "high-functioning."

But for the Katzmans, labels matter less than the day-to-day reality that their son now can join in routine family activities and go to stores, movies and restaurants — outings that used to be derailed by epic tantrums or frightening escapes.

The Katzmans know that they are fortunate in some ways. They've been able to pay "thousands and thousands" of dollars for private therapies, Gary says. And Nathan went to an excellent, specialized preschool, something that doesn't even exist in many places.

They also know that Nathan still may never do many of the things his two brothers and his sister will do.

But Gary says he hopes other parents will see the hope in Nathan's story. "You get this tragic diagnosis and you just cannot see how it's going to get better because it's so bad," he says. "But it does get better."

 

[BusynMember]

Sheila, I've posted my son's story many times. He's like Nathan. Lucas was exposed to crack, raged, banged his head against the walls and floor, echoed, didn't speak or potty until five, was told had "boderline intellect" and was misdiagnosed with ADHD/ODD and bipolar. He's thirteen and with aggressive intervention is bright, happy, calm and practically mainstreamed. His aide is a 1-3 aide who doesn't really need to help Lucas much and tech college is our plan for him now. He has no behavior problems now--is my easiest child. I would adopt ten more of him. He has a heart of gold. There is so much hope for Autism Spectrum Disorders (ASD) these days, and more and more interventions are happening. He will always have Autism Spectrum Disorders (ASD) (we see signs mostly when he's at home in his room), but he has improved to the point of our thinking he can possibly live in his own apartment with some assistance. We'd never dreamed that possible when he was young. And the idea of college for him had been a sad joke.

 

[Fran]

I do want to point out that improvement doesn't necessarily mean functioning. Information learned and not used is just a lot of words. Intelligence is using that information to function, problem solve and to improve.
I watched that program and was heartened that there is research and improvement but there is a leap by those who aren't touched by kids on the spectrum that the child protrayed will have a life like the others. The statistics still do not bare this out. Very few are employed full time and almost all are underemployed. Almost none are in a significant relationship. Most are loners and eccentric. We are in the very early stages of helping small children to learn to use their intelligence to learn skills they need to master the real world. Our hope and push has got to be more research and more intensive treatment as well as creating environments so that the adults within the spectrum can have a life. Apartment complexes or campuses that allow socialization without allowing the adults to be victimized,minimized or barely tolerated.
The best part of difficult child going away to school in NY is that he had a group of friends. They helped each other but they had fun. It was their version but it was just so healthy to see him appropriately socialized. He is having a hard time with the changes. His friends who seem to have less attachments are moving on. By being less affected he is suffering more. I love that he has had that experience and craves more of it. Even a serious dating relationship that turned sour is a life experience that is typical. It's important he had the same types of experiences that his n/t peers have had.

Again, I am heartened to see progress being made for the young children but we are far from seeing these kids be part of the mainstream of life.

 

[needabreak]

my easy child has Pervasive Developmental Disorder (PDD)-not otherwise specified.now he is 4 years old.when he was two i started to notice things that were not normal.at first i thought he was deaf.i used to bang pots and pans behind him and i would not get no reaction.i would not get no affection from him he hated to be touched.thats when i called infants and toddlers and started to get help.also he would not talk.now two and a half years later it is unbelievable the progress he has made.he still does not like to be in crowds and still can not speak clearly but he is coming along.my only wish is that he would call me mom and i got that right befour xmas. so i firmly believe in getting help as soon as possible the moment you think something is wrong.i feel bad though cause all my attinition went to him i feel some how it is my faught my difficult child is the way he is.even though people tell me its not that will always be in the back of my head.

 

[Janna]

Love the story, Sheila.

Remembering back to when Dylan was in kindergarten, first, even 2nd grade - standing at the tree at recess, alone, singing to himself, friendless, makes me sad.

Today, he's the friendliest in the class. The teacher reports him as being willing to go on a limb to help the other kids, wanting to teach, wanting to be friends. MY KID? :smile:

I was lucky enough to have good interventions for him. I do think the Autism Spectrum Disorders (ASD) therapies helped, i.e. speech, social skills classes, Occupational Therapist (OT), the TSS in school. I think, without those, he wouldn't be the same child he is now. I also believe the interventions are extremely important, for any child with an emotional problem, but especially for the Autism Spectrum Disorders (ASD) stuff, where medications really don't help.

I'm getting a real enjoyment out of seeing so much positive Autism Spectrum Disorders (ASD) info lately. Dylan isn't the same kid he was a few years ago, either, and it's great.

Janna

 

[BusynMember]

Fran, you got it right. What looks like and is improvement doesn't mean the kids will function well in a typical world as adults. I've seen stats that indicate only 3 in 100 can be independent completely, and I believe it. I think my son will need some watching, no matter how much he improves. I may send Lucas to tech school, he may be able to graduate (with supports) and still may not be able to do the job once he has to perform. This is very much an Autism Spectrum Disorders (ASD) issue. the improvements have a downside--they can deceive you. Autism Spectrum Disorders (ASD) kids have a very different mode of thinking, as YOU do know :smile:

 

[Fran]

Absolutely.

 

[Hound dog]

Having a grown child with Pervasive Developmental Disorder (PDD) I've got to say, knowing isn't doing. T knows what to do. He's even trained for a good paying job in computers. But can he do it? Now that's altogether something else.

I think it's a two edged sword.

My T can do exactly as I expect him to do most of the time. If I'm there to supervise him. If I'm not there, he does nothing. Example: He wants to go back to work at Walmart. He's been saying that for 3 wks. husband had to drag him out there the other day to fill out the application.

You can do all the teaching and training. All of the support systems can be there. But in the end it all depends on whether they are able to follow thru. They simply don't think the way we do.

 

[Marguerite]

"I've seen stats that indicate only 3 in 100 can be independent completely".

Something to consider - we are making HUGE progress in understanding and 'treating' autism. Our autistic kids are being permitted to adapt, being supported more and generally getting the chances to USE what abilities they have and still get the support they still need. It is still early days for many of the younger generation for whom there has been better understanding and more support. I'm hoping that we will see that 3 in 100 improve slowly over the next ten years, as those currently in school begin to enter the workforce or further education with a higher level of support than was available in previous groups.

There are still many hurdles to overcome. It's not all roses, not easy even when they're adults, but it's easier than it was one, two or three generations ago.

My goal is for my boys to live and work independently. I'm prepared to be there for them as long as they need me, but I will be delighted when I see them functioning independently. I know for difficult child 1 he's going to need a live-in carer. Right now that looks like his long-term girlfriend could be it. It's a co-dependent relationship but in a positive way. They support one another and together, they can function much better than either can as individuals.
That's not a perfect result for him, but it's much better than I anticipated even five years ago. And just today difficult child 1 had an interview with a disabilities employment service who are working to place him in an apprenticeship - and HE found the job!

difficult child 3 - while he still has a long way to go, especially with social skills, I'm beginning to see some glimmerings of potential independence in him. He's planning a career path in either computer programming or database work, or some area of computer technician expertise. He's already a fair way down that road, having begun teaching himself programming a few years ago and already working to fix other people's computers.

In difficult child 3's drama group most are still school-age, but the few that are not - more than half are working at least part-time. Some of it is assisted employment, but it's a job. They are learning to integrate into the workforce. Admittedly, these kids would all qualify as high-functioning autistic, because they are now capable of communicating. According to our stats, about half of autistic kids are high-functioning. The half that are not - I agree, living independently is not an option. But the half that are high-functioning - their chances are improving with each passing year.

Our kids do take a lot longer to make less progress, but they do still make progress. Sometimes it seems like two steps forward, two steps back, but they are constantly trying, in most cases. easy child 2/difficult child 2 is 20. She finished high school within weeks of turning 17. But only now is she beginning to do the further study that will see her in a career of her choosing. She has taken three years to get the confidence in herself (and the personal skills) to be able to attempt this.
difficult child 1 is 23. By the time I was 23 I was married, had half-completed a university degree, had bought some land with husband and was mapping out my life. But difficult child 1 simply isn't there yet. He's where I was at 17. He might actually be qualified in a trade by the time he's 30, instead of 20. But I do believe he will get there.

Sometimes simply having that belief can make a big difference in the outcome.

And one final point - a woman I know was believed, in her words, "to be mentally retarded". She barely went to school at all after the age of 10 and when she WAS at school she missed a lot due to ill-health and never had any support in the classroom. Talking to her, you realise she is uneducated and not too bright. But she's got a lovely, happy personality and is a fighter for disabled rights. She has accomplished a great deal by knowing the regulations and getting perfunctory wheelchair services upgraded to the level where they actually can be used. She would go in and test new disabled toilets, to make sure that they COULD be used. Too often they could not - the door would open the wrong way, the lid on the seat would not lift up (truly!) and in one case the door would not latch, allowing anyone to open the door for everyone right down the public hallway to see the disabled person on the toilet. She got it all fixed.
After being told she should never have kids, she gave birth to and raised twins. Her husband was physically abusive, so she divorced him.
She asked me to help her publish her story. What she sent me at first she had typed laboriously on her computer. I could hardly understand it, her spelling and typing was so atrocious. But she slowly improved with practice and taught herself many other computer skills. Now, her book has just gone into reprints, she has recorded it onto CD herself, she is now selling CDs and MP3 files of it along with PDF copies, all on computer disc. And all of this is self-taught. She lives alone. She needs a lot of support as she is quadriplegic (with some minimal use of her hands). She still drives a car.
She sells these books and CD packages herself, promotes them herself and is STILL an activist.
When she left school she worked in a sheltered workshop until she married. She is just one more disabled person who has done far more than anyone ever expected would be possible.

"No man is an island, entire unto himself." John Donne.
It means that we all rely on others to help in t his way or that. Our difficult child kids are no different - they may need support, but we all do that. Increasingly, more formalised support is there to ensure that our kids can live as independently as possible, within their limitations.
Maybe difficult child 3 will never leave home. Maybe he will never work full-time. But if he can be happy, doing his best in whatever he does, enjoying life as best he can, I will be glad for him. Whatever we can get, we'll take gladly.

Have hope. It really does make a difference.

Marg