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Hi, I lurk around here most of the time - my daughter is 15 1/2. I've had worries about her eccentricities and quirkiness for about 7 years... and finally last month she was assessed by a psychologist.

She scored borderline in a lot of areas - the psych felt that she made a lot of eye contact for example but my daughter felt that it wasn't recognised that she couldn't sustain eye contact - that she can only manage a very quick glance from time to time. My daughter also didn't elaborate on her interests - because she did't feel safe. But the psych felt these two things were enough to indicate that she doesn't have AS... Even though she was clearly rigid and inflexible in other areas of thinking and very anxious with the communication with the psych, and was not interested at all in enquiring about anything the psych tried to discuss with her outside of the actual test....

Anyway - next month we go to a multidisciplinary meeting including the original referrers, the Paediatrician, the school and the psych. What do I need to do to ensure that my daughter gets her diagnosis? (She is very, very bright (A* all the way) and is looking to go to university - but I worry about her ability to get a place if it came down to an interview. Hence my drive for a diagnosis now - she can put it on the forms and it would have to be taken account of.)

I'm also wondering about me, about how I've been feeling for the years of bringing her up, all the anxiety and the heartache and sadness...I feel like I should have done more for her when she was younger to get a diagnosis, but whenever I tried I was just told that she was shy and quiet....I suppose that because she wasn't causing trouble they weren't interested....

Sorry to go on. I find that I can't share this stuff wth anyone else - I'm divorced and quite isolated myself...

Since both legal protections and health care entitlements tend to be very dependent on where one lives, it's hard to make suggestions that we know will be useful, but ... assuming that you live in the USA -

If the evaluation you are referring to was done through your daughter's school, and you don't agree with it, you can disagree, in writing, with the Evaluation Report, and request an Independent Educational Evaluation. The IDEA does not require you to delineate why you want an IEE, just that you disagree with the ER that the school district has developed. If the school district refuses to pay for an IEE, the matter would go to due process hearing. An IEE can be done by any qualified professional of your choosing - it need not (and should not) be done by someone from the school's list of providers. If you use someone from their list, you are not likely to have a truly independent evaluation.

If there is a local autism center, parent group, listserv, or any group of parents of children/students with special needs, try to make contact so that you can get guidance in finding appropriate service providers and in dealing with your specific school district. Even though the law is the law, each school district has its quirks, and the people who are there know their own districts best.

Good luck!

jat, people in the US tend to use the word MOM in place of MUM, and College rather than University.


MilliesMum, don't beat yourself up. There are plenty of us who have grown up without even knowing why we were so peculiar until well into middle age. We survived. It's a handicap whether you know what it's called, or get any help for it. The most difficult aspect of this particular handicap is that because others cannot see any external physical evidence of it, they don't take it seriously as a disability, and tend to treat us with contempt and intolerant impatience, as though we were being different and difficult intentionally, out of some personality defect, rather than an actual brain dysfunction. I'm afraid that will be a problem long after any special services are available. I think the most important thing anyone can do for us is advocate awareness and recognition of the fact that AS is a handicap, and insist that our rights be protected.

I think it is commendable that you want to help out your daughter, but to be honest you probably don't need a label. Despite what the ADA says, putting Asperger's Syndrome on a piece of paperwork will practically disqualify you from most jobs before you ever get into interview. If you look at the job offers out there, 90% of them will have 2 requirements:

1. Must have excellent communication skills
2. Must be a team player

If you put 'asperger's syndrome' on a form then the person who is sorting the resumes will read that and think to themselves, "Isn't that like mild autism or something. This person can't be good at communicating or being a team player." And your daughter will never be called in for interview. When the hiring manager has hundreds of resumes to sort through for every job it doesn't take much to get a resume disqualified. In terms of getting a job, putting down that you have Asperger's syndrome is like putting down that you are an ex convict. It kinda kills any hope of getting a fair shot at a job. And you really can't claim unfair treatment because you are just one of the few hundred resumes that got denied. It is impossible to prove in court that you were denied a shot because of Asperger's syndrome, and thus the ADA will offer no help.

I am not saying your daughter doesn't have Asperger's syndrome, or that you should ignore the issue entirely. Go ahead and talk with your daughter about it, read about it, and learn anything you can which would be useful to you. There is a lot of useful information out there that may help you to better understand your daughter, and help your daughter better understand herself. What I am saying is that getting a label of Asperger's Syndrome so that you can put it on your job applications in order to have an excuse for a poor interview is rather counter productive. If you were trying to get on to Social security disability then I could see the need for a label. But if you want to enter the competitive work force then a label does more harm then good.

If you are looking to have an excuse for a poor interview then try using my technique, feigning sickness. When I go to interview I introduce myself and then avoid shaking hands. I tell the interviewer, "Sorry for not shaking your hand, but I am just getting over the cold, and I don't want to risk spreading my germs. I am not coughing any more so I don't think I am contagious, but I don't want to risk getting you sick." This has the effect of making you seem considerate and also garners some sympathy. I can then follow up with, "Sorry if I seem a bit out of it today, I am still taking some cold medicine so I am a bit foggy" This explains any odd behaviors like 'aloofness' or other typical signs that would make people think you interview poorly. Now this is of course a lie and highly manipulative. But when you compare it to some of the lies normal people will do at interviews I don't think it is entirely unreasonable.

MilliesMum, I hope this will encourage you somewhat: one of my dear friends is married to a man who only realized he had Aspergers after he was grown. Having gotten this far undiagnosed, he has still managed to live among us NTs quite well and has a great job as an engineer. People just think of him as quirky, but it hasn't hurt him in terms of a job (perhaps because engineers can be quirky anyway? )

Anyway. The fact that you're this concerned about her makes me think you've been a great mum to her and, with or without a diagnosis, she's going to do well.

I think your desire to have a diagnosis before she goes to college is very valid. I could have used far more support than I got in college, and when I tried to get it, people were generally exasperated and confused by me. I remember being told things like "why is this hard for you when it's not hard for anyone else?" Hell, I didn't know either! There's more knowledge out there these days, and more services. If your daughter needs them, try to find out what you need to do for her to get them.

For someone who might seem borderline, what you may need is a specialist who's willing to give you what you want. By that, I don't mean someone who will lie. But diagnoses are subjective and I have heard of specialists who do things like diagnosing "PPD-NOS" because they don't want to say the dreaded word "autism" to a parent. (Which may be helpful psychologically, but can royally screw you when it comes to services.) You need someone openminded and flexible.

But first ask around and find out what is needed to get her support.