Now it's Schizophrenia. The bad thing about research is for every 'study' that supports one set of views, there are three others that support an opposite conclusion. Autism? It's the water, bad parenting, vaccinations, genetics, heavy metals, pollution, preservatives, etc.. etc., etc...
As the Dad of six children with Autism I'm more concerned with research that can help the Autistic person to have a more full life. Research to uncover the best in education, social training, nutrition and treatments. Some funding spent on 'why' is acceptable, but the bulk needs to be addressing the here and now and plan for the future.
Funding for Autism research is good, funding to help with day to day living, is better.
Autism is a spectrum disorder, caused by a spectrum of reasons, needing a spectrum of treatments and a spectrum of funding. (Spectrum: A broad sequence or range of related qualities, ideas, or activities).
Our country must get moving to discover what can be done improve this situation. If every parent of Autism will be an advocate we can make a HUGE difference for our children. So make calls, write, search and read. Do what you can when you can. We are all in this together and we need each one of us.
Wednesday, March 4, 2009
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10 comments:
I agree with you 100%. The how and why of Autism don't concern me nearly as much as the "what do we do now?" My job is to find a way to help my son function in this world. The limited resources available would be put to better use if they focused on the same thing.
I couldn't agree with you more, either! What if they find out that autism is 99% genetic and only 1% from environmental factors? Not too much you can do about preventing it. Let's spend more time, money, and effort on therapies and education please!
Amen to your post! As the grandmother of two small children both autistic, I'm much more concerned with finding ways to help them achieve, to learn how to be the absolute best they can be in their life. Does that mean I don't care what caused this disorder? Certainly not -as that does have a place in the order of things too but I just think learning how best to help them is the higher priority -or should be.I post frequently about my life with my two little grandkids (ages 5 and almost 3) simply to try to show people that yes, autism has its issues, but that doesn't mean these kids aren't just as valued, loved and wonderful as is my older grandson, now almost 12 and NT. Each is fantastic in his/her own right and deserving of the very best life has to offer.
I think half and half. I think we should be trying to find out the "Why" because my children will some day have children and I think they deserve a answer. I DESERVE A ANSWER.. Here's an example; bear with me: Just think, what if they just treated cervical cancer, but never found out how to prevent it. But because they did, now my daughter can receive a shot that will minimize her chances of having it. Furthermore, you have to know why in order to treat autism, it we don't we will have another generation lost to this disorder.
Economic hardship is real, trust me I have spent thousands on my son and we don't qualify for SSI because we make too much. The school programs bite, so I'm home schooling (a lost of $35,000 a year leaving a teaching job)...I think every autistic child should receive special insurance (which would include DAN doctors, ABA and meds) and SSI & a food supplement to help with special diet needs regardless of their families income. I think that would help a lot of family's. As for the school system honestly if you have a child with no special needs it still suck, I don't think there is enough money to help our public schools...
So I'm half and half on this issue.
This is a tough one for me. Tough because I look at my life and what I've done for myself and I know that I like who I am. Yes, I process things differently from others, and no, some of the "social neurons" don't exist. But I've learned enough "social graces" to mimic what I wasn't born with, and have found ways to work around certain aspie traits that trip others up. Also, I have a wonderful spouse and kid and a rich scientific career. I doubt I'd have either were I like my NT sisters and brothers (all 7 of them) because I'm the only one who is doing well for myself. And I'm truly happy. So the thought of "curing" me scares me. The thought of not being "me" because society found away to prevent autism (to prevent "another generation lost to this disorder" as another commenter put it) scares me.
BUT... then I go to meetings for autistic/aspie adults and see those who cannot take care of themselves like I can. Or interact with the autistic child of my friend who can't speak and has twice endangered the lives of his parents.
Then I'm not so sure. Not sure what is the right answer, and not sure IF there's a right answer.
By the way, I linked back to this post on my blog http://savedaspie.blogspot.com/ but not sure how to activate the trackback function so you would know. I'm still kinda new. Thanks for the great blog!
Dad of six I read some of the comments about the show amazing families. I wanted to tell the readers I believe you have a very functional family. your one son who someone said did all the work- I have a foster son similar to him and He enjoys running the sweeper and he can't stand anything on the floor he likes to pick it up. People don't understand that they can not sit down and watch one minute of tv mine walkes constantly Your son remindes me of him so much. I am glad to see that you and your wife keep him engaged in activities I an sure He feels good about Himself when He helps out. Your Chidren are in outside services they interact outside of the home with others and that is the most thing you can do for them. I also have a lot of children and the reality is laundry is a never ending battle to try and keep up. Days mine are all put away and more days it is all over the place untill I can wash it and put it away. Your Home is not unsanitary so don't worry about anal people that think everything should be perfect and in its place. They don't know how to adapt and live with others comfortably. Your one daughter has the worst case of autism amoung your Children I can see that and understand why you said what you did. I have had foster Children similar to her and I believe she is at an age were you could start to train her with pull ups and rewards to toilet train. it takes a lot of time and patience and would be a lot easier if you didn't have to divide your time betwen all Children. I allso believe it is every individuals choice to have as many Children as they choose. If someone can't afford Children but they have them let them learn to live with less and find a way our parents and ancestors did. Let those people who want to limit births move to China I also understand the mattress with no sheets I have had foster Children that pull them off constantly strangle themself by wrapping the sheet around their neck rip the sheets destroy furniture and pick and tear apart everything in the room. I use to put thick blankets on the bed at night when they went to bed for them to lay on over the matress and fold it and put it away untill the next time they used the bed for sleep. I have never had six autistic Children in my home at one time I wish you all the patience that God can give you.
I also agree with you. I have autism and I am pretty functional, my child has classic autism and he needs much more help than i ever needed, but we can't provide it for him because the cost if prohibitive. I personally feel that keeping our finances in good shape does help him feel secure which will go a long way to him becoming more functional. We also have another child with medical problems and intellectual disability and a normal 2 year old. We(my husband and I) have our hands full, but we are happy.
I just stumbled onto your blog and several thoughts keep recurring as I read your posts. First, we have at least one son with either Asperger's or PDD-NOS. We have two younger sons that look quite normal to me, but then again, so does the oldest. We may have more children on the spectrum than I know of. There's a large part of me that thinks the higher functioning people on the spectrum are more of a personality type than a disorder.
I think that in order to know for sure what we're dealing with we have to be able to answer how and why there are so many children being diagnosed with Autism Spectrum Disorders at this time.
There are some individuals very affected by AS disorders, others are a bit quirky but manage quite well in life. There do need to be set parameters for public assistance. There are a number of older members of my family that would likely be on the spectrum if they ever sought diagnosis. They work as economists, engineers, and bank loan officers. There is no reason for any of them to access public assistance. I think there needs to be a very concise formula used to figure out how severe the disorder is before SSI and Medicaid are available. The problem of course is that you are absolutely correct when you quote, "When you've seen one person with autism- you've seen one person with autism."
We definately need answers to what causes autism, for all we know it could be the microwaveable food. I for one would welcome more intensive research on autism and its genetics, the problem is the research is to slow, and the conclusions not solid enough. There needs to be more funding and a scientific push to find answers to the causes, be they genetic, environmental or a combination therof. My guess is that the causes effect pregant women and occur early in development perhaps due to an immune event, the cause of this? a foreign agent, a flu vaccine given during pregnancy..although that would mean that women who are pregnant from Nov to March are more likely to have Autistic kids...not sure if the stats match that.. the foreign agent could even be the fathers DNA which is in the child and present in the pregnant womans bloodstream.
I would like answers, help is also needed, but I get the feeling that without solid causes the country just wont care about autism, half the people will think were all crazy parents trying to screw them of thier precious tax dollars, and the other half will deny there is any problem.
In my last 2 jobs Ive talked to my 2 bosses (both great people by the way) briefly about my childs PDD-NOS..they both are optomistic my child will recover.
However as my child grows older and gets worse in comparison to other kids his age I realise that society as a whole is just not aware of the problems that families with children on the spectrum face every day. Its hard to be optomistic when your 6 year old child hits you 11 times in the spine while you sleep because you wont do repetative task X with them at 5 oclock in the morning!
Oh and if autism was 99% genetic, that would be great. People would have an answer, parents could use genetic screening to have a better chance of having another child free of autism. I for one would agree with free Genetic Screening to eliminate autism.
There may be drug targets that would be found leading to better treatment.
The government could provide more help as kids could easily be classified as having autism and hence get more help.
With the genetic tests people would have less autistic kids, and the rates would drop meaning more money to help fewer kids as time goes on.
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