Tuesday, May 4, 2010

Advice for Parents of the Newly Diagnosed

This is written in response to this Call for papers on the subject of autism.

1. Don't Panic. Ok, I know it sounds like the slogan of a certain comedy science fiction book, TV Show, Radio Show, and Movie that a lot of geeks like, but it's true in this case too. That's the first thing you shouldn't do. There are a lot of "charities" and "doctors" out there right now in the internet and in society that are hoping that you'll panic at your child being diagnosed with autism, and accept their cure. Not all of their advice is bad, but not all fits all autistic children or people. And some of their more expensive recommendations are downright awful. So don't panic, do your research, and NEVER accept a single opinion on what is right for your child. ALWAYS ask to see the data.
2. Heavy metal poisoning is the #1 crackpot theory out there today, and there's good reason for it- it's co-morbid with up to 75% of autism cases, depending on whose numbers you believe. However, there's great danger involved here as well; chelation therapy is downright dangerous in the wrong hands, and some are willing to fake lab results to charge you big bucks to kill your child. Be VERY skeptical here.
3. Ok, on to my more standard and positive advice. Autism has as many gifts as it does curses- it's not all bad. One of the best things is obsession. It may seem like a social negative, but for many autistics, it's the key to getting enough money to get one's needs taken care of while staying out of the asylums. Look for your child's obsessions. Find the one you can turn into a hobby, and that has money making potential, and encourage it. One day it will turn into the career that makes all other social problems go away, or at least, pay people to do them for your child.
4. Religion- I used to say that autistics need heavy liturgy. But after reading Autism and Alleluias, I'm revising that. *SOME* autistics are nice and quiet, and they need a heavy liturgical religion, to get the neurotypicals also in the congregation to be quiet enough for the autistic to listen and pay attention. *OTHER* autistics respond in other ways- in the book, young Joel responded best to music- and did best in an African-American Baptist service where he could sing and dance along with the rest of the congregation. Pay attention to your child, and make no assumptions that they will follow the traditions you grew up with. Oh, and this all holds true for non-Christian religions as well; it's not limited.
5. Do Not Be Afraid. Like #1, this is important. If you fear autism, it will overwhelm you. But if you keep optimistic, you'll learn more than you ever dreamed possible- your child will show you a whole new world.
6. Patience is a Virtue. That's true of all special needs parents, but especially true of the autistic. If you react to your child with anger, he'll react back to you with anger. But be patient, and he'll have fewer meltdowns.
7. Sensory issues are probably the #1 true cause of autistic behavior. Find a room in your house that your child can hide in- doesn't need to be much bigger than a closet, most autistics are claustrophiles anyway. Big enough for a recliner or a bed. The autistic should be able to control light, sound, and temperature in this room, and this room should always be available. This is the best way I've seen to control meltdowns. Related, for those with auditory issues, are Red Headphones- the construction site headgear that cuts down sound about 200 db. I know many autistics that has helped.
8. If at all possible, stay together as a couple. The biggest predictor of success in early intervention is if the parents stay married; 50% more vocabulary if the father is in the house. Don't let this split you up. You need each other, so stay together.
9. Related to #8- take time for yourself. Your autistic child's needs can become all consuming- destroying the rest of the family. You can't help him if you're falling apart yourself, so take time away from your autistic child every day.

That's all I can think of right now. I might post more later.

4 comments:

ZenaT_Pinter2284 said...
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Ted Seeber said...

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Glennie9654 said...
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佩璇 said...
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Oustside The Asylum by Ted Seeber is licensed under a Creative Commons Attribution-ShareAlike 3.0 United States License.
Based on a work at http://outsidetheaustisticasylum.blogspot.com.