Is It Possible to Do Too Much Research About Autism?
Saturday September 16, 2006
Ever since their son was diagnosed with autism, a reader writes, his wife seems obsessed with research. She's on the web until the early morning hours, reading and downloading information. While he, too, is concerned for their son, he's worried that his wife's behavior is problemmatic.
Many parents can relate to this experience. It's easy to become completely immersed in researching a child's disability, to the exclusion of ordinary activities and pleasures. And it's just as easy to find such behavior confusing.
Is this type of constant research a problem, or a normal phase? What can a spouse do to help? Family psychologists Drs. Robert Naseef and Cindy Ariel address this question from two different perspectives.
Have you obsessed on researching your child's autism? Or do you love someone who surfs till dawn? Share your experiences!
Comments
I am a parent of a 3 years 9 month old little boy who was diagnosed with Autism Spectrum Disorder at age 2. In the beginning I thought that all we could do for our son was provide him the typical speech, occupational, physical and behavioral therapies. I was wrong. Through research done on the internet and other local parents, I found that there is a TON more to be done to help our kids recover from this disorder. There is a lot that the “medical community” WILL NOT TELL parents of ASD kids. You have to be involved ENOUGH if you want to help your child the best you can. Both parents need to be involved also. Our son started getting better after we had blood work done to see if he was deficient in vital vitamins and minerals. He was extremely deficient in all the vitamins and minerals that control and support brain function….thus leaving him speechless and emotionless…kind of in a daze. I found out through the internet about DAN! DOctors that specialize in treating Autistic children. We made an appointment and started the ball rolling. This doctor has our son on high doses of various vitamin supplements and minerals to bring his levels back up to where a normal childs would be. It is a slow process but it is working. WIth this we saw improved facial coloring, some speech, great behavior….he just feels better all around and it shows. He has also started the GFCF diet and chelation therapy with a lot of metals, including mercury coming out in his urine and stool. His regular pediatrician has said that he would not even categorize him as Autistic anymore…he’d say he was PDD. He attends a regular pre-school and is doing great and keeping up with the “normal” kids. Most people do not even know he has a disorder unless we tell them about it.
So I guess what I am trying say to parents is….BE A LITTLE OBSESSIVE…BE INVOLVED…YOU WILL HAVE TO MAKE THIS YOUR MISSION IN LIFE (at least for a year or two) TO GET YOUR CHILD BETTER. Use the internet to get information because your pediatrician WILL NOT tell you anything about these alternative methods of treating Autism. We were told that our son will never be able to attend normal pre-school or kindergarten and that there was absolutely nothing we could do to help him. THAT’S WRONG! GET ONLINE AND SEE FOR YOURSELF.
And to the husband that thinks that his wife is obsessed….be happy she is because your son has a good chance of getting better if she searches the web enough. She will find the answers she needs. My husbands tell me all the time that my son is lucky to have me for a mom because he doesn’t think that he would have the patience to sit and research the way I do. Our son would still be banging his head and screaming at every noise if I did not sit on this computer to find solutions. Please do the research for your child. If you don’t help them … who will? You can start by visiting www.generationrescue.com .
Thank you for your time.
I have a 6 yr old downsyndrome autistic son I spent 4 years surfing the net for answers and was obcessed. I still surf the web and have found some great support groups that share information. I enrolled my son in a ABA school he is a different kid. I believe you need to be in the know and if you have a good service coordinator you usually are it took me 5 years to get here and now I know Im in-the-know and do not obcess over it. My husband is much happier.I have watched kids dxed severe and mainstream in 2 years of an ABA program.
Thanks so much for your comments, Tracy: same goes for me! If we had just waited around for the regular pediatrician, I doubt my son would have gotten started at age 3 with speech and occupational therapy. I will say that I did get (and sometimes still am) obsessed. But there is a mountain out there to climb for our kids, and the sooner we start climbing, the sooner they will get the treatments they need.
I had to follow this link, because I was sure this was my husband writing in. I’m glad I did, because I feel as though I have a lot to say on this topic.
First, let me say that it was me, not the doctors, who diagnosed my son (same for my daughter). I knew something was wrong, but didn’t know what to call it. One day, it hit me out of nowhere. Autism. The very first thing I did to confirm my suspicions was to look it up on the net. The next step was getting the formal diagnosis. We waited 4 months for that. During those 4 months, I was researching both to prove I was right, and to prove I was wrong. I had to educate myself on the subject, so as to be ablr to confidently agree/disagree with the doctors.
Would I call myself obsessed? No. Would most people have said that I was? Yes, absolutely. However, obsession was not the emotion that I was feeling. It was helplessness. I couldn’t “fix” it, unless I knew what “it” was. Even when I knew what it was, the next step was finding out why it happened. After that, I was back to trying to fix it. What therapies are the best, what schools, what programs, what toys? What should I expect from the future, how can I plan??
I no longer spend hours and hours searching for one far-out clue that might be able to help my children. I have learned to manage my time better, and I now know that the best possible thing I can do is spend that time with my children. A tired mom is not the best mom. But, I had to go through that process in order to realize that. I believe that was my “grieving” process, which everyone goes through upon receiving the autism diagnosis (each in their own way).
Your wife truly believes that she is going to help your son, and perhaps she will. There are all kinds of supplements, diets, therapies, and programs that just may be the answer for your child. You’ll never know unless you try. I think my kids are much better off because I did do my homework. Obsessive or not, she is doing all she can in her own mind to “fix” what she believes needs fixing. As a parent, that’s what we do.
Good luck to you and your family!
Haha! I thought it was MY husband writing in! If I had the time, I would say almost exactly what Tracy said!
We wouldn’t have even had a dx at 21 months without me researching online!But I have more research to do, so I must go.
If you call it obsession, so be it. But, my child is on the road to recovery. It has been a hard yr since the dx, and will be a couple more hard yrs, but we are fully convinced, with the progress Jade has already made in just one yr, she will be mainstreamed by age 5!
Great you are trying to help your child.I was like you in the beginning and it helped me learn how to help my son who has Down syndrome & Autism.Someone has to speak for the child that cannot speak.I kept telling his peditrician that something else was going on besides Down Syndrome but the Docs would have never diagnoised if I had kept researching and pushing. He now goes to an autism treatment center that reconized the autism right away. Follow your heart. Cyndi
I go through fits and starts of study. I went through the typically early period of reserch, and become comfortable with that I knew and his program. After a few years I went through another spurt when things weren’t improving much, and then another later when things got really bad.
Right now my son is doing better, but I’m going through another spurt of research with the awareness that he’s getting older and he at somewhat of a cross-roads as he heads towards the teenage years. I want to be sure to do whatever I can during this period (he’s almost 13).
I’ve learned a lot each research-intense period I’ve gone through because the knowledge about autism and related disabilities keeps expanding. This time around I’m doing more research than ever because I am homeschooling. Which brings me to another question about your other post Lisa — I didn’t see a space for comments on your story suggesting we stop worrying about our kids. I have some thoughts on that issue also!
Cynthia
I too have a son diagnosed with Aspergers. I found that surfing the net has helped us alot. My husband as well thinks I am crazy but doesn’t realize how many other people are dealing with the same things. I found great comfort in many different groups online, recieved and gave alot of advice. So if helping my son is looked at as obsessive OH WELL we are all weird…. I have to say all of these articles are helpful So a big thank you Laura
My son is 16 yrs old w Autistic disorder and Mental Retardation as a comorbid syndrome. I have done a lot of reading and it did help us to set up our own home based “inexpensive” program, taking all factors into consideration. When you have a child w ASD, you need to rearrange your life and events around your home to best manage your child who can not and will not adjust because of his Autism. I do not think parents should get stuck w one method of treatment, but should try everything out there if they can afford it with so much caution. Some of the things you may read on internet may or may not be suitable at all for your child, as your child’s genome is very different from my child’s or others’ out there.
REsearch helps you to be “PROACTIVE” and look out for your child’s future. One thing that I have not found in a large scale research is what will happen to all these kids when they grow up to be adults? Where are they going to stay? who will care for them? When do you call a person engaging in a “CHILD LABOR” practices? What I mean by this is, when you have a grown u adult w AUTISM who has a mind of a say 7 yr old and you expect that person to work? Isn’t that like a child labor? You are telling a 7 yr old (in a body of an adult) to work and earn a living?
How does that work in the world of AUTISM? Do all adults w Autism work or are taken care w all required community based support services today? I guess not.
They have funds for war, but not for our children to live and work within the same communities where they went to HS. UGH! I am pissed. Please join me and others who advocate for supported community living arrangements to all disabled in our society. Stop the war, you will have tons of funds for our kids.
Thank you for reading my notes here.
MAY GOD bless all our kids and families who struggle w them daily. We love you in IL state.
I think it is “normal” to obsess with researching for a while after getting the diagnosis of autism for your child. Researching helped me process my feelings about the diagnosis and made me feel better that I was doing all that I could do to help my child rather than sit around and feel sad. The doctors who made the diagnosis told us that the schools would be our ally in fighting autism and put him in a program that would be sufficient for our 32 month old son with autism, which couldn’t have been further from the truth. I found out the truth only with months of reading books, surfing the internet and talking to other parents. If I had believed what the prestigious diagnosing doctors had told me, I might have gone into our first meeting with the school and accepted what placement they proposed for him without questioning, and he would have most likely still be head-banging today with no language. Instead, I found out about ABA (a dirty little word that many school districts fight desperately to keep out of their repertoire due to cost, lets face it), and my son responded incredibly well to it from the first moment he was exposed to it. We fought the school for ABA services and it was well worth it because our son now reads, writes, spells, adds, subtracts, and talks better than I dreamed he ever would.
Research helped me find the DAN protocol and this, too, has been very beneficial to my son. No mainstream medical doctors are probably going to recommend the DAN protocol unless they have an autistic family member who has benefitted from it.
Of all of the mom’s who have “obsessed” with research, I have only known one or two that may have gone a little overboard with it. A person who is so obsessed with research and talking about it so much that they never have/take the time to actually apply what they have learned to their child is probably too obsessed. So, too, is the person who exhausts themselves, their child, and their finances with every latest treatment they read about rather than choosing to try the ones that make the most “sense” to them.
However, spending lots of time researching, especially the first year or two after the diagnosis, is fine in my opinion as long as you keep it in perspective. Because it is best to start treatment as young as possible with autism, and time is of the essence while one decides what the best treatment is for their child is.