I think my kid is autistic but no one will help?

Post Reply New Topic

I'll just come out and say it, but these days you need to demand what you need from medical professionals. My mom had to do it when I was getting my diagnosis, and when my sister was having so much pain in her knee that she couldn't walk (They eventually did an MRI and found a serious fracture. If my mom hadn't demanded and MRI, it could have gotten worse and given my sister a permanent limp.).

Just keep trying, and see as many people as you can so you can get a perspective from other points of view. No two psychologists think the same. One could point out something another one missed.

She sounds a lot like me and my son. Yeah, you're going to have a hard time on both ends. I feel your frustration. *hugs*

No, you are not "nuts."

You're probably not going to like this, but...

...as relatively mildly affected as it sounds like she is (I know it doesn't look mild to you right now, but it sounds like it is, relatively), unless you find a VERY good and VERY knowledgable professional to work with her, you might actually be better off bumbling around on your own.

For the "very high functioning," diagnosis can be DANGEROUS. Not always, but there are all kinds of professionals out there (both medical and educational) for whom difference equals deficit, who are heavy-med happy, who will read you (and later, her) her limitations so vociferously that whatever she might have been could realistically be cut off.

Sorry. I'm not trying to b***h at you or scare you. Just-- kind of what happened to me.

I feel your frustration. If I get through this day without all hell breaking loose, I'll be back after I put the kids to bed with a better post and some suggestions (I hope).

I disagree to some extent. Not that this doesn't happen, but a parent with their eyes open can stop it from being dangerous. Most of us have gotten second, third, fourth, and fifth opinions until we found someone who actually had strategies that made sense AND made a difference and were not just a bunch of words, labels, and meds. I think most parents posting here, even newbies, are the kind of people who do their due diligence, and in general would be wary of medicating an otherwise healthy and happy child without some good, specific evidence to back up the need and a lot of research.

I will say, we were told to medicate DS twice by two different professionals. He's never had anything stronger than coffee and we are finally turning a corner with him - but in their defense, there comes a point where I'd rather he be medicated and alive than the alternative, and there was a time when we were walking that line pretty closely.

Still, at least one of those two doctors (not shockingly, the one hired by the school) suggested medication after a single two-hour visit (I'm not sure what you call it when it's just the doc and the kid) with my son, without talking to us at all, with zero background information. While I thought the other, better doctor (who was very respectful of our wish not to medicate) made some good points (one of them being wait and see, and keep an eye on the extreme behavior, which we did) the first yahoo clearly thought meds were magical. It's out there and does happen.

You are an expert in your child. Trust your instincts.

That may be true. I went through the second and third opinion mess before I gave up and accepted what they were trying to do to me-- but in all cases I was in pretty retrograde places, dealing with people who had only a little knowledge-- enough to think themselves experts, not enough to be aware of what they didn't know. Just enough knowledge to be a dangerous.

I was better-educated on the subject than they were. I knew what they were saying was wrong.

Once I washed up in a big city and got help from people who had REAL expertise, the antipsychotics and all the talk about how all the things I'd accomplished had to be either a fluke or through someone else's effort went away and I started LIVING again.

I was also so tired, dispirited, and beaten-down by that point that I accepted it anyway. Stupid of me, but-- I warn everyone. No one is immune to stupidity, particularly when stressed and feeling all alone. The wrong professional can be very adept at dishing out the old beat-down, and it's more a matter of lack of confidence than lack of due diligence on the part of those who get run over. Some of those people are very, very good at destroying the confidence of the people they're working with. I don't know if they do it intentionally, but-- they have so little respect for laypeople that patients and parents end up thinking they're being arrogant in respecting themselves.

If you start to get that treatment, or get the feeling you're getting that treatment, pick up your kid and your keys and LEAVE. Don't look back.

Of course, it was also on my own behalf that I was talking to them. If it had been my kid's brain at stake, I might have been a lot less willing to accept that "voicing dissent" equated to "being combative" and/or "insisting on living in denial" and meekly follow instructions even when I knew it was destroying me.

Write the stuff about YOU being an expert in YOUR CHILD down on an index card. In BIG letters. Carry it around with you. Hang on to your faith in yourself, in your judgment, and in the child you see in front of you like both your lives depend on it. They do.

Sorry. Paragraphs all garbled. That probably doesn't make enough sense. I'll try again later.

As a lot of people have said, most docs wont diagnose Aspergers until a child is around 5 maybe 6.....some people are lucky and get diagnosis early. My son seemed to evolve and seem more Aspie the older he got and gets. He also had issues when he was a baby....I had to put my daughters kung fu sparing helmet on him when he was learning to walk. It may have helped that my daughter was diagnosed a few years before with classic Autism and that I and my older daughter were also diagnosed with Aspergers but still if you daughter has the signs and symptoms, the doctors will pick up more on it when she is a bit older.

You can either find someone who is better schooled in observing Aspergers in young children which may cost you some money if your insurance does not cover it, or learn about her and learn to help her at home until she is old enough. Also you can call places (if you are in the US) like your Regional Center or Easter Seals for help. None of my kids are on medication but my daughter who will be 20 this month wants to go back on one of the medications they put her on when she was slashing her wrist and had to be hospitalized. We believe she may have a co morbid condition of Bi Polar disorder which runs in her fathers family....her father has it and my 24 year old son who we lost in August had it. People with Aspergers do not need medication unless they are harming themselves or they are at an age where they can make their own decisions.....even a teenager, if they want something for their anxiety. Still make sure it is the smallest dose they can give. Read Temple Grandins books....especially Seeing In Pictures and Emergence....lots of great ideas to help your daughter.

It's hard to find books on AS that apply to preschool kids. Here's a good one:

Asperger Syndrome and Young Children: Building Skills for the Real World [Hardcover]
Teresa Bolick (Author)

Being an advocate for your own and your child's health care is so important. We can agree/disagree over if it's right or wrong, but that's kind of how it is.

I contacted a local mental hospital's neuropsych department and they had one doctor who saw older patients. If your insurance permits you to see specialists without a referral it might be best to contact a neuropsychologist.

Girls do present differently than men; so you may want to read up on girls. There are some good books like Aspergirls (but they focus on slightly older girls) but it's still good reading.