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My daughter is 4. She was diagnosed with PDD-NOS when she was 3. She has made a lot of progress in the past year. She met all her IEP goals, and now she is losing some of her services. In fact, there is some doubt that she has autism now from her doctor and the school.

I would love my daughter to be "normal", so that her life would be easier, but I know there is something still very wrong and that she needs to keep getting therapy.

Is this normal? When I ask her what she's playing, what she did yesterday, or try to engage her in any kind of conversation she yells, "I don't want to talk right now, ok?", or "no!". She won't make eye contact with me during our conversations. Her attention wanders away from me and what I am saying. Her ability to verbally reason and to express abstract ideas is far below her peers, even though she does use multi-word sentences.

To test her form myself verbally, I made up a story about a Barbie and her baby and a problem they were having, and tried to ask her questions and have a conversation about the Barbie's problem. She was irritated, frustrated, didn't want to listen, wouldn't look at me, and then after several attempts said something simple like, 'The baby can have the milk! Now stop talking."

She has trouble with when and why questions, and still mixes up her pronouns pretty badly.

Is this child normal? I'm sorry, I think she has mild autism and she needs more services.

Who evaluated her ?......if it's the school system, well then good luck with that- from my experience, they look to find ways to show you that your child is "cured"......if you haven't already gotten an independent eval, i suggest going for one.........if you already have an independent eval, then i suggest that you contact the doc & an advocate to help you figure out what services your daughter still needs & how to get the school system to provide them

Your medical insurance might cover speech services. Try to get an evaluation done by a speech and language pathologist who is skilled in pragmatics of language, NOT just articulation. You might be able to find someone good by asking on a local group for kids with ASD, or (if you live in the States) check Wrightslaw - they have a section called "Yellow Pages for Kids" which is organized by state and lists resources for kids with special needs.

This won't tell you whether or not your child has autism, but it will give you a good sense of what her language skills and needs are, relative to her peers, and it sounds like that is what you are most concerned about at the moment.

I definitely agree with ster - do not trust a school district or early intervention provider to be honest with you about your child's needs. They have a vested interest in serving as few children as possible, and providing as limited services as possible to the few they service. They also have an interest in pretending to "fix" the kids to whom they have provided services. You need an independent evaluation.

Yes, it is the school district who is telling me she is "cured" and trying to justify reducing her services. All she is getting is 30 minutes a week of ST. My health insurance benefits for speech have been used up. I used them up over the summer because she did not qualify for summer services last year.

Her Dev. Ped. is not suggesting any more therapy. However, I know from other parents in my metro area that he belongs to a group of neurologists at the local children's hospital that "do not believe in high-functioning autism". He thinks her language problems are caused by anxiety, and that's why she's avoiding conversations and not understanding questions. I said, well, if they were caused by anxiety, wouldn't you expect her to have a lot of variability in her expressive langague skills? Somedays she would, (if this were the problem) speak normally, and on anxious days wouldn't? She has the same problems every single day, and most of it is with the subtleties of language, such as prepositions, pronouns, abstract references. She has a fundamental problem with her ability to process language. She has an auditory processing delay. She has problems following stories and with sequencing. How could those problems be caused by anxiety?

I am seriously considering a second opinion, but to tell the truth, I am intimidated. Every time I suggest that she really does have a problem to someone in the school they respond with veiled hostility, and since the doctor isn't suggesting she get more therapy, I really feel pushed into a corner.

It sounds like you need a new developmental pediatrician. What, exactly, does he provide for you? (That's a rhetorical question - think about it, but don't feel compelled to answer it) Do you need a developmental pediatrician? Can you do with just a neurologist, or even a really good pediatrician? Regardless of whether it's a developmental ped or a neurologist, or a general ped, get one who isn't part of this bizarre group! My 15 y.o. Aspie was not diagnosed at that age, because his milestones were all way ahead of the charts, and nothing seemed "off." But at this point, there's no doubt that he is not typical. He's very bright, and wonderful, and if he were in a typical school at this point, he would not survive. He is delighted to be with others like himself, and he is definitely high functioning - and definitely on the autism spectrum. You need to find doctors you can work with. You know your child best, and you need people who won't discount your observations.

When does your insurance year start over? You said you used it up in the summer, and summer is practically here again, so you might be ready to start a new year. Many insurance years start in January, so you might have already started (unless you're in the southern hemisphere, in which case, you have a long time to wait). If you can't get it covered by insurance, can you scrape together the money for the evaluation to be done privately? Any birthday money coming in? A good, solid speech & language evaluation is critical. Don't ask your school - TELL them. AFTER you have the evaluation done. You'll feel much more confident when you have a report in your hand that confirms what you know. If possible, have it done by someone who is willing to come to your meeting with the school district. The evaluator will be much better at presenting your case first hand than you will be at translating for her/him.

Thank you for the advice.

I think I am going to drive about 100 miles away to an autism center that is run by a University and have her re-evaluated. I am going to call my insurance company beforehand and make sure it will be covered.

I have not had luck finding a speech therapist that will evaluate semantics and pragmatics. They test receptive and expressive language only. Ironically, though, the SD will not formally re-evaluate her receptive and expressive language with a diagnostic instrument even before reducing her services! They don't want to pay for the test!

Your daughter is still very young, and I personally think accurate diagnosis can be tricky with high functioning young ones. But once a child has autism, they always have autism. They may "graduate" from the need for immediate services, but they still are autistic, and services may be needed again in the future. My son, for example, "graduated" from speech in 4th grade, but re-qualified in 6th. As your children grow, so do the expectations of what they can do, and since AS kids aren't on the same developmental track as NT kids, they are going to fall behind at various points, even if it isn't at ALL points.

So.

Definitely get a second opinion. And don't let the school drop her from their caseload, even if they feel she does not qualify for any services from them at this moment. It varies by state, but here the standard the schools follow is "access to curriculum." If something in the child's condition impedes the access to curriculum, they get services. If there isn't currently anything preventing that access, they don't. It is far from an optimal standard, but public school doesn't generally have a duty to provide the best education, just an adequate one. And, so, they have clear criteria that tell them who to help and who not to. But, as I said before, you'll find it's a moving target. Traits that do not impede "access to the curriculum" in K can interfere in spades in 6th grade, and so on.

We were lucky that the IEP team at my son's elementary school had a strong desire to go beyond the basic standard. But we've found the middle school to be a different story. I've accepted that it is just the way it is, and the way it's going to be. A lot can be done at home. The school and your doctor are only parts of the team that serves your child.

This is exactly what I think will happen. She'll appear "normal" at different times, but other issues will come up as she gets older. Her issues have already changed so much from the time she was an infant. She appeared entirely normal before age 1, and then appeared to have serious issues at 18 mos.- 3 years, and now doesn't appear to have them as much any more. I think she's just on a different developmental track.



If I knew how to give her therapy myself at home, I would. I wish I could find someone who could teach how to help her with semantics and pragmatics.

At this age, a lot of it is common sense. When she says something in a way that isn't clear, or rambles, you repeat back to her succintly what you believe she was trying to say. You work with her on a visual cue for when she has started to repeat herself, so that she knows you have gotten and understood what she started out to say, and can try to finish it up now. And so on. In part with my son I just didn't know that the way he was wasn't "normal," so I wasn't TRYING to gently work on any of it.

The stuff they are working on with my son in 6th grade however, is another story. I probably know the concepts in general but I get lost on the terminology the speech therapist uses so it's difficult for me to know if I could help with any of it. For that, good thing I've got a professional on it!

Trust in your instincts. It's amazing what we can do when we allow ourselves.