What questions should the money for autism research address?

Question

Would you be interested in finding if there is a relationship between paternal age and autism currently in the US? What specific questions do you want answered? Do you want pre-natal testing worked on?

Dear SpecEdtch,
. We need to get the data.You know how horrible the situation is for these kids and yet people keep ignoring the father's age issue. It is not fair to to be so cavalier about the risks of later fathering because the parents are not the ones who have such agonizing lives. We now know that sperm mutate. If guys want to become fathers late I think they should banks their semen in their 20s. I hope you speak out,because you know a lot about the realities. I wish you the best in your work.
Maybe you could write a book about your experience because someone has to tell it like it is. It is not to make anyone feel guilty but to make people aware of reality.

Dear basketcase

Thank you, it is very exciting. In a 1980 study of autism in Sweden 34 was the mean age of the fathers and at that time this mean age was much older than the fathers is the non -affected group. I hope a lot of money goes to programs to help these kids as they grow up. But we may need to re-think what is an older father. Certainly 32 seems quite young now-a days. Alex

Answer 1

Yes, I would be interested in the parental age of autistic children. In my experience many of my students parents were older than 30 when they had their children.

I work directly with adolescents who are severely autistic with cognitive disabilities, and minimal to non-verbal in communication skills. My students are extremely aggressive. They are both self-injurious and assultive.

Finding material that is age appropriate is next to impossible. Add to that covering state curriculm as required by NCLB and its a deadend. My students do not benifit from being mandated to be instructed like non-disabled peers...actually this is torture and quite possibly part of the reason for violent aggressive behaviors. We are trying to emerse them in instructional materials that have no meaning to them, and will do nothing to better enable them to live the fullest lives they are able to live.

These children need intensive behavioral managment before they can learn about the water cycle, yet I am charged with teaching the water cycle by law and job description. BTW I was not told of the severity of behaviors that I confront daily when I interviewed for the job. I am there six months and I will be their at least until June maybe through the summer 07. I do not know if I am meant to work with this population, but I am acutely aware that these children are not receiving the help they need and this weighs on my heart and mind heavily.

I suppose simply put much research needs to be put into adolescent autistic children with severe behavioral disorders.

Answer 2

As the parent of a 12 year old boy with autism, I can't tell you how totally excited I am to see this very important legislation pass!!! From what I've read, genetic research will receive a good portion of the money, which is important--I have a 16 year old neuro-typical daughter, I want her to be aware of the risks she has of having a child with autism, so she can make those decisions regarding her life with good information. I believe we're on the cusp of finding some good genetic links, parental age may be a factor (but wasn't in our son's case...I was 27 and my hubby was 32 when he was born). I'd love to see more research into the autism/adhd link as well as the links to other neurological disorders. I also believe that more education needs to be done, and better funding of screeners who can detect autism in its earliest stages, so that parents don't have to wait 6-12 months before they can even get an appointment with a developmental pediatrician, thus wasting precious time that can be used in therapy. More funding also needs to be given to public schools for (in many cases) development of early educational programs that use an ABA model. But also I'd like to see money put into developing programs for these children as they turn into adults. I think so many parents are worried about the infant/toddler aspect of autism, they're forgetting that the children do grow up. What do these kids do when they turn 21, and "age out" of the public school systems? More money needs to be given to programs specifically developed to meeting job training and independent living needs of adults with autism, because in less than 10 years, there will be a glut of young adults with autism in the system of current providers, which are currently massively underfunded and staffed. In many areas, programs will have to be developed from scratch. I believe that while working on the genetic/pre-natal issues can help us find out a way to possibly prevent autism in the future, something still must be done for the millions of children who are already here.

Answer 3

GENETICS - If we could identify the genes (many doctors feel strongly that more than one gene is involved) that make a child vulnerable to developing autism, we could screen potential parents to know what their likelihood would be of them having an autistic child. Studying the Amish (VERY low autism rate) would be a great start.

BEYOND GENETICS - Apparently one doesn't inherit autism as much as they inherit a vulnerability to autism. Something "triggers" autism in such children. Something which would not trigger autism in one without the genetic vulnerability. Many have suspected vaccinations to be this trigger, usually claiming the mercury-related preservative Thimerisol as the cause of autism. But Thimerisol was removed from vaccines in 2001, yet the autism rate continues to rise, so that was apparently not to blame.
Obviously, if we could find what the trigger is, maybe it could be something avoidable.

TRAINING - I am very involved educating my niece who is autistic, so I would be interested in studies on what helps autistic children. Or networks for people sharing & working with ideas.

UNFORTUNATLY - Most charities spend a big hunk of thier money raising more money. http://www.charitynavigator.org/ And government is even worse at wasting the money they spend!

Answer 4

As the parent of a child at the high end of the autism spectrum, I would like to see more research into the impact of the environment on genetic predisposition in causing autism. I don't believe that vaccines are the single cause in the increase in rates of autism over the past 10-15 years, though they are certainly a factor for some children. I think we have to look closely at chemicals that have been released into the environment over the past century, including dioxins, pcbs, heavy metals, etc. A great organization doing research into causal factors in autism, including neuro-toxicology, is NAAR, the National Alliance for Autism Research.

Answer 5

I would like to see several areas covered.
First, I would like to see some more focus on the genetics of the disorder, see which marker are doing what.
Next, I would like to further classifications into subgroups; when was the onset, what are the specific areas affected, severity of symptoms; and other areas.
Last I'd like to cross those groups into environmental factors; including but not limited to vaccines mother and child received, what sequence they were in; were the children breastfed, sonograms, age of parents; blood levels of various toxins/insults...
Between the three of those, we should be able to get to the bottom of Autism...

Answer 6

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Answer 7

Pre-natal testing, also research should look into any long term treatment for autism.