Desperately need help--seeking diagnosis for teen girl

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Hello all! I am new to these boards and seeking advice. I believe that my 15 yo daughter is on the spectrum but I am the only one that seems to see it. The doctor I took her to informed me that she is "smart" and "successful" and that he could "tell by looking at her" that she did not have Asperger's.

However, her "success" is largely attributable to the fact that I removed her from public school five years ago and she is now homeschooled. In school she received poor grades despite her intelligence and was unable to form relationships with peers. She still does not make friends, sometimes plays with much younger children but is interested in them only in a superficial way, if they will cooperate with the things she wants to do. She has no real interests outside of movies and television but memorizes dialogue from her favorite shows and is hurt that others cannot remember the way she does.

She is extremely compliant (when someone is watching) and does what she's told but has no interest in things like hygiene, clothes that fit/match/are appropriate for the weather. She seems to operate on "autopilot" when doing any type of chore and forms rigid routines after doing things once (ie we had dinner early yesterday, so we must be eating early from now on.)

The biggest obstacle for seeking diagnosis is that my daughter lies. I don't think she means to be so deceptive, she just has this reflex that causes her to lash out in a defensive way. She has watched others enough to know how to act/speak when pressure is on her. But again her words are superficial and if you try to dig deeper you find she doesn't really understand what she's saying.

Any advice is welcome and sincerely appreciated! Should I keep pushing for a diagnosis? Would it really matter to have it at this point (since she's not in public school?) Over the years I have kept telling myself these issues would improve with time but at 15yo it is hard to ignore the fact that nothing is getting better, often her behaviors seem to be getting worse. I was a very young, single mom and she is my only child and my family is not very supportive so I feel completely lost and unprepared.

I sought a diagnosis for my daughter when she was 15. I used the characteristics checklist in the book Parenting Your Asperger's Child. It is so detailed and includes things she did, but that I never even considered were part and parcel of her 'problem'. It was a real eye opener. By the time I'd completed the checklist, I knew this was the answer we'd been looking for.

The checklist is available online here:

http://school.familyeducation.com/learn ... detoured=1

There are 6 parts to it (as you can see). You just have to give an email address to access them. Don't be put off by the link it takes you to saying 0-12 months, once you look at the checklist, you'll see it isn't for just for that age group.

Do the checklist from that check list mentioned by MotherKnowsBest, and make a hard print copy of it. Also, go on the General Autism forum here. At least one post article there has links to online tests. Do those, and make hard print copies of those as well. Then get an evaluation done by a psych doc with experience with spectrum disorders, and show the doc your hard print copies to back you up. GPs and general psych docs don't have enough knowledge of spectrum disorders, and often have a lot of misconceptions about it. This naturally has a negative effect on their ability to give an accurate diagnosis of whether or not someone is on the Autism/ Asperger's spectrum of disorders.

It does sound to me like your daughter may be on the spectrum, but you will need a professional diagnosis to get any help from the government or to get your insurance company to pay for any treatments.

Hope things go well for you and your daughter.

If you think she might purse any sort of education beyond your home, get her tested. The accommodations in college can be a huge difference, just to keep her stress down and prevent a breakdown.

I linked online versions of all the tests I had as part of my diagnosis here:

http://www.wrongplanet.net/postxf97198-0-105.html

These aren't the same as my daughters, but they are quite similar in what they are asking. Hers were much more detailed.

Another thing to think about: most general physicians, counselors, and social workers do not have enough information about autism to properly diagnose it. You want her to see a developmental pediatrician or a neuropsychologist who specialize in developmental delays like autism.

We had the same thing for our much younger son; it took us years of continuing to find help until we finally went to a specialist. Not only did they diagnose him with Asperger's syndrome, they carefully explained the diagnosis, what it meant, what we should be doing as parents and what to expect. That is a critical part of a diagnosis that no one should be without.

I'd agree with that. In the process of seeking a diagnosis here, we had to go through various other professionals before getting to the expert. All the others (school nurse, school psychologist, school counsellor, school doctor etc), who knew her quite well, said that there was no way she was ASD. The specialist who eventually diagnosed her said afterwards that he knew within 10 minutes of meeting her what the outcome would be.

I'm in agreement with some of the other posters here. My ds is also 15 and was diagnosed PDD-NOS early this year. Psychologists do not have training in identifying it. I brought it up for 3 years straight to my son's and kept getting, "I don't see it. He can carry on a conversation. He doesn't have it." It had slipped by another psychologist for 6-7 years. Meanwhile we kept seeing things/hearing things from our NT dd that didn't make sense for a kid without something else going on. Finally he was referred to a neuropsychologist. I believe that is who you should seek out.

Neuropsychologists are capable of doing a full battery of testing and can then assimilate all of the results to give you a firm diagnosis. It can take several days to complete the actual testing. Also, they can give you suggestions for various treatments to help your child. I realize your child is homeschooled, but if your dd is likely to go on to college, the diagnosis will allow your child to have accommodations in college. My understanding is that it is good for three years so it would likely to cover your child's first year of college. In addition, a neuropsychologist will test for other things instead of just looking for possible ASDs. They look for attention, fine motor, memory issues etc. It is possible that issues may be uncovered that you were unaware of and can be addressed. Be prepared to pay if your insurance won't cover it. It cost us close to $3000 for the diagnosis.

Another reason for testing at this age? It is not too late for improvement. We have a slew of suggestions for our ds some of which we are doing now and others in the future so that he won't be overwhelmed. Our ds now attends a weekly social skills group as a result. I know controversial on here, but we have taken him to a psychiatrist and he is on meds for social anxiety. He says he feels better on the meds so that is what matters to me, not the controversy on here. We are seeing baby steps in the right direction. He is more likely to engage in conversation in a social setting than before diagnosis.

By the way, my ds is fully capable of lying as well. I didn't see any evidence of that at the testing, but some people on the spectrum are capable of lying. I think testing can ferret out where the truth is.

Feel free to pm me separately if you wish. Our kids are in similar situations.

Thank you so much for all of your replies, kind words and advice. I am slowly making my way through the tests and checklists and I will feel VERY empowered having them with me at my daughter's next appointment. Like many of you have described I have taken her to regular psychologists in the past, they only see her intelligence and her ability to "keep up an act" for the hour she's with them and they don't look any deeper. I actually had one tell me "she's just an artistic soul."

Anyway, I have now made an appointment through my university's psychology clinic/testing center. I am hoping they will be more helpful but am skeptical as well. They are supposed to have one of the highest ranking psych departments but I am a grad student in another department and the psych classes I have taken there told me they stick by their DSM standards and incorporate a huge amount of gender bias. Her appointment is in June so luckily I still have some time to get prepared.

Her going to college in a few years is definitely my primary motivation for seeking help now. I think I got stuck in that "she'll grow out of it" mindset for so long I didn't realize how much time had gone by. What I want most is for her to want some sort of change/improvement. She is convinced that she is right and the world is wrong and that just causes her to withdraw more into fantasy rather than trying to be a part.

It's so frustrating to me that you have to KNOW THE RIGHT WORDS to unlock services; that was our experience, too. It's like there is some society of secret passwords you have to be initiated into.

Fortunately, most of the folks here are really, really good at decoding the secret passwords. Good luck!