Daughter has Asperger's, I probably do too - help!

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I don't even know where to start. My 16-year-old daughter has Asperger's, and I probably have it too. I have always felt like I was on the wrong planet. I am very intellectual and have been highly successful in business, but I seem to cause drama and turn people off when I get "stuck" on something. I see it one way, and most other "normal" people see it from a different perspective. This has helped me in business (I see things that others miss when troubleshooting problems), but it sucks in relationships!

I have a very understanding and caring wife, but she is not on the spectrum so at times we are on different planets. My 16-year-old daughter is on a planet similar to mine, but far away from her mom's planet and her 12-year-old sister's planet. This causes a lot of friction between them, and I always end up defending the older daughter because we see things from a similar perspective - and because I can understand what is going on in her mind, and her mom and sister cannot.

Today we had a meltdown. This is a very common scenario. The 12-year-old decides to take a shower, and the 16-year-old decides that everyone already read her mind and knew she was planning to take one first. So she physically blocks the 12-year-old from taking a shower. The younger sister has already put up with enough hell from her older aspie sister, so she immediately begins yelling and hitting to defend herself from the physical attack.

My wife and I just started seeing a counselor who specializes in Asperger's and Attachment. We have only been to one session, and she is going to see our 16-year-old next week for the first time. Our older daughter doesn't even want to admit she has Asperger's, and we have not had a formal diagnosis. All of the therapists and counselors we have been to have been quacks! We even took her to a psychiatrist who prescribed Concerta (Ritalin), and it kept her up all night and made her almost psychotic.

Our next door neighbor has a son with Asperger's who is a year older than our daughter. He was formally diagnosed, and his parents said it hasn't helped do anything except stigmatize him at school. We decided not to go that route for the same reasons.

Recently we have gotten behind 5-6 months on our mortgage payment of $2,500.00 a month. My wife cannot work because she has to referee the two daughters so the older one doesn't kill her younger sister. In addition, we have no family support on either side to speak of - so we are on our own on our own planets. It seems like everything has gone downhill and I feel helpless and hopeless. We don't even have any friends come over anymore.

My Aspie daughter has extreme anxiety. She cannot sleep without the lights on, and gets freaked out at the smallest noises. I am very worried that she will not be able to live on her own as an adult without assistance. Right now we may be forced out of our home due to foreclosure unless we sell it. There are no rentals in this area at all - we would have to move the girls to a new school district. They are both sad about it, and the Aspie daughter is extremely anxious about the idea of a new school. The one she is in now is safe, but she has no friends there to speak of.

I have a half-sister with an Autism spectrum disorder who is in an institution due to some of the schizophrenic behavior that she has on occasion (she hits people who she feels threatened by, saying they sent "mind pops" her way). She calls me an wants to know why she cannot come home. She doesn't have a clue that anything is even wrong with her. They drug her with Depakote and other mind-altering substances to keep her non-aggressive and calm.

Watching my half-sister go through this hell makes me worry that my daughter might be subjected to a similar fate. My half-sister's life is a life of torment and terror that I wouldn't wish on anyone, and it scares the hell out of me that my daughter might be in for something similar.

Well, at least I finally found a place where people can relate to my plight.

Last edited by BenThere on 10 Jun 2011, 3:36 pm, edited 1 time in total.

Sorry to hear about the struggles, you, your wife, and your two daughters have been through, life sure does suck at times

I hope that being able to vent here, find support, ask questions, or meet people who share similarities helps, and just wanted to say welcome to Wrongplanet.org, and I hope you and your family find things that can help all of you here, learning about yourselves, each other, and this crazy wacked out world we live in.

But anyways welcome, and sorry I don't have much more to add.

Get diagnosed, get on medication, and do everything your therapist says. You cannot make any more decisions in life because you are not an expert

I agree, you need professional family therapy.

Professional therapy is a good idea, but make sure the professional you find is experienced with Asperger's and autism (or better yet, specializes in it). If they aren't, they may not fully understand what is going on and may misinterpret you and your daughter's actions. It can happen even if someone is experienced, but I think finding a specialist increases the chance that they'll understand.

Anyhow, I hope the situation improves for you and your family. Sounds like life is very difficult for you right now.

The trick is in finding the right therapist. We have been to numerous therapists and received misdiagnosises each time. We even went to an SIU psychiatrist who assured us that our daughter didn't have Asperger's (without any testing at all). She put her on Concerta (a form of Ritalin, which is speed) - and it kept her up all night and almost made her psychotic.

I've actually done a much better job of learning about and understanding my daughter's Asperger's symptoms than any of the "professionals" we have been to. I have over 20 books on Asperger's and Autism, and have researched it for over eight years now every since we saw our daughter frequently rocking back and forth and twisting her hands as a baby. We have tried and tried to get a diagnosis, but they make you wait on a waiting list for a year and then it costs thousands of dollars for the diagnosis procedures. Not to mention the high probability of misdiagnosises by therapists and counselors who don't understand Asperger's... and for what? Our next door neighbors received an Asperger's diagnosis for their 17-year-old son, and he almost got strangled by a bully last month at high school. A diagnosis doesn't help in that situation.

I read somewhere that 80% of people with Adult Apserger's are unable to live without assistance. Do you think that is true, or is it way off? I worry that my daughter may not be able to function independently as an adult. My fatherly instincts are telling me that something is missing... she acts like a 3-4 year old in certain situations, while other times she acts like a 16-year-old. At times it's hard to tell which is just the teen in her and which is the Asperger's... but when the meltdowns occur, it's usually pretty obvious.

You won't see major change in your daughter without major changes in how you're handling her. That said, I think that formal diagnosis or not, she needs services. With a diagnosis, she could get BCBA services and work on behavior. As an adult, without a diagnosis, you won't get any help, financial or otherwise for her.

A label in school makes no difference to the kids, as the kids don't know who's labeled and who's not. I'm guessing the boy with Asperger's is being bullied not because of what's on his chart but because the other kids view him as weird. Ask most people on this board... even without labels when we were young, we were bullied.

I wish the best for you and your daughter.

I think the prediction that 80% of adult Asperger's can't live without support is probably pessimistic. My son doesn't want an official diagnosis, although his teachers and the Ed Psych are as certain as they can be (without the diagnostic tests) that he has Asperger's syndrome. He has his problems and he has his difficulties, and they are just like those I had, and my dad had. My dad was employed throughout his life, stayed married to the same (NT) woman until he died, and brought up three kids (two NT and his little clone, me!). I've lived independantly since the age of 19 (not easy, admittedly, but possible) and I'm married to the most typically NT of men and we have three kids (two NT, one not). A diagnosis of Asperger's wasn't available to my dad or me when we were younger, nor was it available to many other people who just kept on jumping over seemingly impossible hurdles to lead 'normal' lives. I sincerely hope that your daughter succeeds in doing this. From what you've said it would appear that you've coped, so your daughter may well do the same - she has your genes, and your invaluable insight and experience to help her.

My best advice is just to be encouraging. Make it your job to understand her. It'll pay off!

Autism, especially during a crisis like the one you seem to be in, can be downright hellish. The worst thing is that nobody understands you. You're completely alone, every day is a nightmare, and no one is coming to help you.

Have your daughter tell her story. Try to understand how she sees the world. For example, prior to my self-diagnosis, I was having nightmares about global eugenics conspiracies. I believed that "society" was an evil, faceless entity that wanted me and my family dead. Without understanding that, it would have been impossible to understand the other things I had been feeling.

Cannot over emphasize this. Make sure you see someone who has good experience or specialises is ADS's.

Can only guess you are from the US? Psychiatric care over there seems so screwed up.

Watching my half-sister go through this hell makes me worry that my daughter might be subjected to a similar fate. My half-sister's life is a life of torment and terror that I wouldn't wish on anyone, and it scares the hell out of me that my daughter might be in for something similar.

Well, at least I finally found a place where people can relate to my plight.

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First, I am sorry you have several difficult and scary situations going on at the same time. I agree that you need help and that you must find a specialist. I relate because I'm a parent with Aspie struggling to finish raising a nineteen year old, and a ten year old. Just so you know - a 16 year old girl is more than challenging, in fact downright impossible sometimes, whether she is NT or an Aspie. I was sent "away" at 16 and it all went downhill from there. If your daughter's fate is going to be like your sister, then starting some help for her now is really important. You are concerned for her - that is an enormous job but it may make all the difference.
Best of luck on the house - I'm trying to sell mine and my mortgage is half of yours and it's an awfully scary process.
- Pat

If you seek professional intervention, do make sure that you heavily research the reputation and background behind anyone you go to. Also, beware of anyone who recommends drug-only intervention: drugs without therapy can often do more harm than good.

Take care.