Need advice from parents with Asperger's

Carol - posted on 04/23/2012 ( 6 moms have responded )

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Long story - sorry. My son has Asperger's. We know it, the doctor knows it, the elem. school teacher knows it. He's not officially diagnosed. I only discovered that there was a reason for why he was "weird" a couple of years ago. Up until 9 my husband and I had always just said that he was just like his dad. At 9 my MIL dropped a bombshell when she nonchalantly mentioned that my husband was diagnosed with Asperger's as a kid. They had legitimate reasons for not telling him and I'm not upset with them at all. It just would have helped a lot with our son. Anyway, I tried to get him diagnosed through the doctor. He was sent to a neurologist who supposedly diagnosed Asperger's. He told us that he's not set up to do that (that'll be $300 and 15 minutes thanks) but he knows a doctor who does. I called my regular doctor again and he said that since it doesn't effect his school work, just work with the school to resolve the social problems. That was at the end of elem. school. His elem counselor said to go into middle school and just say he has it. I tried that. They refuse to help without an official diagnosis. They refuse to diagnos because they say he only acts weird because we told him he has Asperger's. We only told him this summer. The previous 10 1/2 years of odd behaviors and symptoms were just flukes?!? He's getting bullied like crazy and he has no idea how to respond to these beasts. He says that it's his fault because he's a geek and he'll deal with it. He refused to name names until the last 2 weeks. I told the school that he was being bullied back when they told me that I caused his weirdness. Since he wouldn't name names, they told me that I made the bullying up along with the Asperger's.

My question (finally) -- What should I do from here? My husband's been through all this himslef. He believes that he wouldn't be the person he is today if his parents had stepped in and helped him. He thinks that we should sit back and have our son learn to cope on his own and just let him know that we support him and think he's the awesome kid that he is. If he complains about bullying suggest things that he could say, but don't go to the school. So far going to the school has only made things worse. I hate sitting back. The school should not allow kids to hurt him physically or mentally and they're doing both (mostly mental). What's worse, one of his symptoms is that he doesn't feel a normal level of pain. He told a kid that was punching him that he couldn't feel pain so the kid kept punching him harder and harder to try to test him. He could do some real damage. That was in gym class with teachers "watching" them. They did nothing to stop the kid and never checked my kid out to see if he was hurt despite it being in his files.

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6 Comments

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Katrina - posted on 05/29/2012

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I agree that getting help is the way to go, and specialists have told us (as have other parents) that the earlier you get help the better. Children with aspergers have difficulty with social cues, and how to respond to them. Getting your son the help he needs now, will allow him to deal cope alot sooner. The fact that you are asking says that you probably want to step in and help, so trust your instinct mama. Your local autism association may have other ideas also. Get the school on board as soon as possible - no matter how far you have to go - even the board of education for your state. If your schol has a guidance councellor, they may also be able to help. When schools are educated about autism/aspergers they are better able to deal with it. You can also check out www.tonyattwood.com.au Tony Attwood is the worlds specialist on Aspergers. Good luck, and get that diagnosis asap. Keep us posted xxx

Anaquita - posted on 05/23/2012

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I agree with the others that say get that diagnosis. Not only to make the school eat crow for calling you a liar, but then they have to make sure he gets supports he needs. And it would qualify him for therapies outside of school if needed. (Like behavioral social therapy, that could help him learn how to cope with others. Especially others his own age.) Talk to the pediatrician for a proper referral. Either to a clinic, your local university, children's hospital, or a pediatric neurologist. (Not just a regular neurologist, but one that specializes in kids) Or do a search for where you can get proper testing in the area, make sure they take your insurance, and ask for a referral to that place. (The doctor ought to know who takes your insurance but if not... well find out yourself) Then go to the school and let them know that if the bullying persists, then you will get a lawyer. No one deserves to be bullied. If they're punching him, it's going beyond the normal teasing that all kids do and get, and goes flat out into the harmful category. If he comes home with bruises, make sure you take pictures as evidence.

Lisa - posted on 05/23/2012

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Carol- This brings tears to my eyes.

My son, 8, diagnosed with Aspergers early 2012, we are doing EVERYTHING we can to teach him skills that he needs. AS kids are able to LEARN the skills needed for life's social capacity... even though some things won't come naturally.
My son has been in karate since age 5. We take him to Autism/AS social groups put on by doctors and the YMCA to teach him social skills and learning cues, meanwhile making new friends! (What could be better than that??) We talk to his teachers and councelors in school. He speaks with a psychiatrist about 2x month, to help him with anxiety, which is a common thing amongst AS people. We also enlisted him in a week long camp to get him the confidence of riding his bike - which is a free service for children diagnosed.

Our choice, but we are not telling him this official diagnosis right now. We are just taking him to all these things to help him and to have fun.

YOU ARE HIS ONLY ADVOCATE - STOP FOR NOTHING!

If people at school wont help, go to superintendents office, and sit there until someone hears you. Be relentless, call and email daily.. Ever heard of the squeaky wheel saying? If you feel this school is ultimately being negligent, get local press and police involved. Again, STOP AT NOTHING, your little boy needs you.

Lisa - posted on 05/22/2012

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You have to take this further in two ways. First of all, get him that diagnosis. It will help you to help him.

Second of all, go to the superintendent in charge of your school. Let him or her know you are in the process of seeking a diagnosis and want help for your son. Document the bullying that you are aware of and let that person know that if you don't get some help immediately, you will contact your lawyer and the media. Both bullying and autism are hot topics right now so it might just do the trick.

My 4 year old was just diagnosed with Asperger's (but that diagnosis is disappearing with the new diagnostic manual next year so he'll be "officially" diagnosed with High Functioning Autism.) I have had to fight to get him the help he needs and to constantly be on the phone getting the right people involved but I believe it will be worth it.

You may be your son's only advocate for now so don't give up. You are not alone. There are many parents out here who are with you in your fight.

Kimberley - posted on 05/17/2012

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As far as diagnoses goes under the law the school system is required to test any one between ages 2 and 21 i think not sure on the the 21. Since there seem to be so many issue with your present school I would bypass them and go straight to the top. The person in charge of the whole district, i would do this any way because of the bullying alone. If they do not listen to you then yes i would hire a lawyer and go to the police. I would also write a well written letter to the media explaining what is going on in that school. Bullying is a hot topic right now with the media. That and no principle wants to see his school on the evening news for tolerance of bully behavior.
Also as far as diagnoses goes developmental pediatricians are good for getting to the bottom of all sorts of developmental problems one being aspergers. I hope this helps :)

Louise - posted on 04/24/2012

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the way your child has been treated by his school is disgusting ! my son is now 15 years old and was only diognosed with adhd three and a half years ago after us asking for help for years and us being told that he had nothing wrong with him ,and the teachers didnt want to know when he was being bullied . i took him out of school and went to the education authority and put a complaint in to start with . a few months ago he was also diognosed with aspergers and he also has odd due to his aspergers. he only has 1 year left at school and the school has only just started helping him . i just kept on going back to his GP and bugging them to get him sorted out untill they finely refered him to a specialist and i kept phoning the school every time my son came home upset and kept asking for meetings ect to discuss his progress and if your child is being bullied tell the school that if it isnt sorted "now" that you are going to the education authorities to put in a formal complaint and you will be contacting the police and you are prepared to bring charges against the school and the children who are bullying your child . You have to try all the tricks you can to get any help these days especially in schools. there is no point in being nice if your not getting any where! we tried the patient nice approach for years and it didnt work! good luck and im here if you need a chat :)