Aspies For Freedom

Shelby Hainan can name dozens of things that would make life with her 6-year-old autistic son easier.

She wishes a nearby school district had an autism support classroom so she wouldn't be faced with the decision of home-schooling Tyler next year, sending him to a class that's a half-hour drive away or having him remain in an emotional support classroom at Kiski Area School District that doesn't suit his needs.

She's working with limited resources -- both in her finances and in the area's professional services -- to get Tyler the correct level of medication and behavioral, speech and occupational therapy to keep him calm and focused enough to learn.

And she's trying to scrape together enough money to build a fence around her Washington Township home so she can take Tyler outside without worrying about him bolting into traffic on nearby Route 66 or disappearing into the surrounding woods.


"I cannot take my son outside because it's not safe," Hainan said as she looked into her tree-lined, sunny back yard from the inside of her locked house.

Hainan is not unique in her experience with autism and her criticism of the availability of services in the region. As the rate at which autism spectrum disorders are diagnosed continues to rise dramatically, more and more families are likely to share her problems.

Federal legislation sponsored a year ago by Sen. Rick Santorum would help address some of the difficulties experienced by families affected by autism.

The Combating Autism Act, proposed in April 2005 by Santorum, R-Penn Hills, and Sen. Christopher Dodd, D-Connecticut, would funnel almost $1 billion over five years toward expanded research and improved diagnosis, treatment and professional training.

One of the bill's provisions would require all children to be screened for autism before they reach their second birthday because research has shown that early intervention of therapy and educational services helps children with autism or other developmental disorders to overcome their disabilities.

Sharon Huss, a New Kensington resident and former therapy provider, said the services her autistic son, Daniel, 2, receives have made a significant improvement in his language and communication skills.

"We've been really blessed with our early intervention program," Huss said, noting that Daniel is able to communicate through sign language.

Huss also advocates better training for pediatricians so they can recognize the symptoms of autism earlier, which could get autistic children into early intervention programs sooner.

The Combating Autism Act includes money for training programs for doctors, scientists and other health professionals to improve diagnosis and treatment of autism.

The act also would double the number of Autism Centers of Excellence, which were established in 2000 by the National Institutes of Health to centralize research on the causes and treatment of autism.

Another requirement would be for the National Institutes of Health and the Centers for Disease Control to create long-range goals for autism research and to continue to centralize autism research among the many government agencies involved.

Howard Carpenter, the chief executive officer of the Pittsburgh-based Advisory Board on Autism and Related Disorders (ABOARD), said his organization is very supportive of the Combating Autism Act.

"There's not a bill that's perfect, but this is a substantial piece of legislation," Carpenter said. "It will benefit the autism world.

"This will double autism funding at the National Institutes of Health," Carpenter added. "This is a tremendous improvement over the past."

Tracy Grieve-Martin, the clinical director for North Huntingdon-based therapy provider Family Behavioral Resources, said any legislation that increases funding for research and training would be welcomed.

"Most therapists weren't taught about autism in school," Grieve-Martin said. "We learn about it in the field."

With better-trained therapists working with children whose autism was diagnosed sooner, Grieve-Martin said autistic children have a better chance to thrive and lead normal lives.

"The diagnosis rate is just skyrocketing," Grieve-Martin said, noting that FBR treats 800 autistic children in the region. The agency has 13 offices, including one in New Kensington.

Carpenter noted that, while autism advocacy organizations are supportive of the legislation, some are concerned that language authorizing research into possible environmental causes of autism could be cut.

Some people believe that thimerosal, a mercury-based substance once used as a preservative in childhood vaccines, causes or helps trigger autism. Not only are many autism cases diagnosed at about the time that children finish a series of childhood immunizations, but many of autism's symptoms can mimic those of mercury poisoning.

Many government-sponsored studies have tried to rule out thimerosal's role in autism but parents and autism support organizations have not been convinced, questioning the impartiality and accuracy of the studies.

E-mails circulated by organizations including ABOARD have accused American Academy of Pediatrics' lobbyists of working to remove environmental research language from the bill.

Marjorie Tharp, a spokeswoman for the academy in Washington, said the organization has not taken a position on the legislation and is not lobbying for or against it.

"The American Academy of Pediatrics (AAP) supports ongoing research to determine the cause or causes of autism, to improve screening, diagnosis and treatment standards and to find ways to prevent it," she said.

A spokesman for the National Institutes of Health declined to comment on the bill, noting that it was NIH policy not to take a position on pending legislation.

A Santorum spokesman said the bill's language is being finalized among members of the Senate's Health, Education, Labor and Pensions Committee, but he said provisions for environmental research will remain in the bill.

"We absolutely are keeping in the environmental research," said Robert Traynham, Santorum's director of communications.

However, he said research into thimerosal and vaccines likely won't be mentioned in the bill because it is unusual for legislation to be that specific in identifying research topics.

"It is preferred to let the science lead where it leads, not exclude any possibilities or draw any preconclusions," Traynham said.

He noted that it is very rare for Congress to get involved in disease-specific legislation, and that the bill is unlikely to pass unless it is widely supported by the autism community.

"They (Congress) won't go near this with a 10-foot pole if there is not a consensus," Traynham said.

Traynham said Santorum hopes the committee will approve the Combating Autism Act in the upcoming weeks and that it will go to the entire Senate for a vote.

"We strongly believe something needs to be done about autism," he said. "(The legislation) is timely and very much needed."

It couldn't come too soon for Shelby Hainan and her son, Tyler.

"They're not talked about as much as other special needs kids," Hainan said of autistic children. "If you've got a mental retardation diagnosis, you've got it made. They have the facilities and services for them.

"I'm always fighting somebody for him," she said.

She gazed around her modest home, where she uses dog leashes to secure her kitchen cabinets, locks every door and has cleared the shelves of knickknacks to prevent Tyler from smashing valuables or smearing food on himself.

"You can't leave him alone for 20 seconds or it's a disaster," Hainan said. "But I'm crazy about him. I'd have him all over again."
By Liz Hayes
VALLEY NEWS DISPATCH

When parents need help, there are medications that they can't afford, schools that are too far away, and they cannot even get a fence just to keep their child safe, why is so much money being pumped into research, and even more planned?

It seems that there is tremendous focus on prevention via prenatal test, and research towards perfecting that, rather than helping the children, parents, and adults with inexpensive healthcare, and practical needs like safety issues.

I don't believe this is true. Parents of all children with any kind of "special need" often have to constantly fight for services or the best placement for their children. This is not unique to autism. And many people have to battle the notion that because a child has a "special needs" label that he or she will never amount to anything.  

I agree Amy! That's what is so ridiculous about Autism Speaks and CAN. It makes me sick to think about all that money they raise that could actually be put to good use helping families. Why can't people see that?

Oh, poor her!  A whole half an hour!   :roll: I come from a farming community originally in the Australian bush; when I went to high school I caught the local school bus, which took two hours in the morning to get there, and two hours back again in the afternoon.  And we thought ourselves lucky to be so close: there are places in Australia so remote that children get schooled via radio, the "School of the Air".  Even living in the city, it can take longer than half an hour to negotiate the traffic to and from school (although where I live is like a big country town rather than a city, even though we're the capital of Australia; we have the "peak minute" rather than the "peak hour" every day with traffic, according to my sisters who've lived in Melbourne and Sydney...)
Alison

Alison wrote

I agree. I often have to make longer car trips twice a week to get my kids to and from gifted ed classes, and while they are in class, it isn't worth driving home again to wait, so I have to hang about or find something useful to do with that time. It's a good thing I don't have a paid job, because it would be impossible to do if I did.

Let's face it, if this kid in this article will destroy his family home or run away to the woods or run under a bus if he isn't restrained and everything secured, doesn't it seem most likely that there is something more than autism in this child's life? Could that something be intellectual retardation? Obviously this kid isn't the sharpest knife in the drawer. :roll:

This family has three choices:  
1.homeschool,
2.send child to school 30 minutes by car
3. send child to local school in emotional needs class

At least they have three choices.  

If he is in an "emotional needs" class then most likely there is not so much an intellectual problem than behavioural problems.  

"She gazed around her modest home, where she uses dog leashes to secure her kitchen cabinets, locks every door and has cleared the shelves of knickknacks to prevent Tyler from smashing valuables or smearing food on himself."  Why does she do this?  

We usually let our toddlers take all the pots and pans out of the cupboard and put them back.  We let them that the food cans out and put them back.  They are not allowed in the knife drawer but then we are watching them all the time.   Sure they will play with their food if they are not hungry enough to eat it.  Give them the right amount of food and enough time to eat it, then take it away.  They will learn eventually.  

This child is 6 yrs old.  Probably she should not be homeschooling him since she does not seem to be able to teach him how to feed himself or respect any household objects.

Why do these kids run away? - they probably can not stand it anymore.  Like that "autism everyday" video -  make the child do the puzzle, he can do play with it himself but they have to make him do it when they want him to play with it.  ??? Weird ideas about children.

Amy - absolutely agree with you! Actually I think this argument implies the correct approach to the issue of prenatal testing & abortion; arguing that money spent on researching into this and the causes of autism etc should instead be spent on supporting families. I think I might do a blog entry on this...

Oh, and Lili Marlene, Alison etc. I don't really understand the point of your comments. Are you arguing that families should be left to fend for themselves?

The problem is not that people are asking for help but when people feel they should be "entitled" to money or services because their child has a disability.   People demanding what is not their right is annoying when other people are in serious need.  

What is the responsibility of the government towards people and what criteria would make the response fair to all families in need?   Where should charities come into giving helping families?

I do think that charities should be directed toward helping families with such supports as building fences, transportation, volunteers in schools etc instead of raising funds for research.  

There are charities that provide free trips to Disneyworld for children with terminal cancer diagnosis.  They do not really need these trips - it makes them happy.  

Any charity should freely make available what percent of funds raised is used for research, aiding families and all activities including salaries, office supplies, advertising.  I looked on the CAN site and could not find any really good information.

some things really worry me from this article.

first off, autism isn't nesscarily a disabliy in itself, so to say to overcome autism is a loaded statement.  and this also says that autistics never develop, ever without abusvie thearpies and if they mature, they overcame autism.  what garbage.  secondly, the early intervention is probaly aba, which is abusive in many cases.  it problay teaches the autistics that they are awful and miserable as is, and lowers self esteem.  i see the explainton of autism being loaded and being called monsters.

biased statement.  i guess that means autistics that were ocatized sooner were told that they had to be nt, and had a better chance of acting nt, more likely.  why can't they be happy as an autistic, and normal is realitve.

btw, do these autism adovcacy groups talk about what we need or the need that we need to be gone forever?  i'm thinking the latter.  these aren't advoacy groups, these are autism hate groups.

aka eugeics via prenatal screening.  we're going to be the next downs, people.

there's the dreaded d word again.  autism is not a disease, becuase diseases causes pain, autism does not cause pain (althogh the people around us might).

and who is the autism community you talk about?  the ones that hate us and say how much we are a burden to them and say that we aren't human at all?  more like the autism hate community, much like white supremists groups signing jim crow laws...

seems like this combating autism act is going to be our version of jim crow laws to make segeration and ozaration of autistics legal.

M - I totally disagree with your idea that charities should be at the centre of providing support for families with disabled children. Really this is going back to the 19th century. Charities only exist because the public sector fails to take on its responsibility to provide proper public services and public welfare. Support for families should be a public service funded out of *progressive* general taxation.

And I don't know how you'd decide which families are genuinely needy - nor do I think that families with disabled children shouldn't be seen as deserving enough. Frankly, I think *all* families have a right to support. It's extraordinary that, six decades on from the foundation of the welfare state here in the UK, and after a century of the womens' rights movements, that caring for children is still largely dumped on the shoulders of individual women in individual families. Why is there no national childcare strategy? Why isn't there a creche in every workplace *at the very least*? Why is child care STILL privatised?

Reguardless of what it should be, it obviously dosn't work like this at the current time, so don't you think that it would be a good idea for charities to provide these services now?

Not at all!  My point was that this mother seemed to have options, but was still whining about her quality of life.  She doesn't want the child to go out into the backyard in case he runs away: well, go out WITH him.  Maybe even take him for a walk.  Such helplessness on the part of parents really irritates me.  Of COURSE you have to watch your child!  Of course they will play with their food and perhaps even make a mess!  (Horrors!)  Well, they're kids.  Live with it.  I really feel this particular person is making a monstrous great mountain out of a teensy-weensy anthill.
Alison

Erm, well yes, but I thought we *were* discussing what should be. M seemed to be arguing against public welfare for families, and in favour of charity involvement instead, and I was taking him up on that point specifically.

Sorry rocobley.  I didn't realize we were talking about an IDEAL world.   :roll:
Of course, ideally would be nice.  I'll have a million dollars and never have to deal with NTs at work ever again.  Ta so much.
Alison (yes, I did have a rough day at work today.  Does it show too much?)

I never said the government should not help people with disabilities and only charities should.  I was asking how much should they help.  Yes, it would be difficult to decide what each family should get.

What question should be asked is how is daycare and the current educational system affecting children with autism?  For children who do not fit into the "group model" such as children with autism, their families are punished because the schools and daycares do not feel they can "support these children's needs."  Then people think that they need special daycares and schools just for children with autism.  But really, hundreds of years ago, autistic children were cared for, like every other child, by their own families.  Now it seems that a family that cares for their own children and educates them are considered out of the norm.  If I could go back a few hundred years, believe me, I would.  Modern methods are not always better or wiser.