Birth & Parenting Series: Autism Diagnosis Part 3 (Finale)

This is the final segment written by a guest writer whose son has been diagnosed with a form of Autism. See part 1 here, and part 2 here. This last segment gives concrete guidance for parents going through the system and provides a number of very helpful tips, including an online support group founded by our writer!

Programs That Help

But how do you get help for an autistic child? We had insurance through the state of Wisconsin (Badgercare) which has vouchers to pay for special help for children who have Autism … but there’s about a 1.5 year waiting period to get a voucher and a long application process. We figured by that time he’d have been in school long enough he should get help from the school district. We also figured we would no longer be on Badgercare by the time a voucher became available. The good news is there’s something called a Katie Beckett program in our state that can “divorce” your special needs child from your insurance if you find that they need more help than your insurance pays for and he or she can go on Wisconsin’s plan. We did not pursue that because we did not think his needs were severe enough to warrant a voucher. The rules are you must get 40 hours of services per week for young children and 20 hours for school-aged children and we knew he’d be too exhausted to be helped by services after a full school day.

Our School Situation

With regard to the school we attend, we are blessed to attend a Catholic school because he gets individual attention. Some might say it’s because he’s currently only in a class of something like 12. Kindergarten often has 29-32 in it, which is more than they have at the public school, but he will be in a completely mainstreamed class with no real supports other than what his teacher, her aide, and I dream up. This is because my son does not have what the state of Wisconsin calls “educational autism.”

How we found out he does not have “educational autism” is based on our request for an IEP (Individualized Educational Plan), called an ISP for private schools, and I’m not sure what that stands for, but they’re essentially the same thing. One thing to know: do not think that just because you elected private education for your child that he cannot get special education services through the school district. In our case, it did not work out that we got specialized assistance, but in your case, it might be different. More on the IEP/ISP process later!

School families are important, too. I wrote a letter to the other parents so they would know our son’s diagnosis so that they could be supportive in helping their children be patient with our son. They reacted very positively, and were glad to know what it was. I heard a story from another mom about a child with Asperger’s at a Catholic school where the other kids just took over in helping him and as he passed from class to class, his peers would help to make sure he had his materials and didn’t lose anything. As a result, he did not need any sort of special accommodation until he got to high school and lost his peer support network. It is because of the supportiveness of the Catholic school my son and niece attend that I am not concerned that the school district will not provide support services directly to my son. I also know that the kindergarten teacher is also a certified special education teacher, and apparently the school district was very sad to lose her to our school. Knowing that helps me as well.

Navigating the School System

How do you figure out what, if anything, you can get for help? You start with a letter to your school district that states you want your child to be evaluated for a disability. In all likelihood your school’s principal knows to whom you address the letter. The district may take a while to get back to you. Check in with them if that’s the case. The trick is they have 45 days from the date of parental consent to test your child (with some exceptions), but they rarely ask for consent right away and your letter is not consent. You have to sign something else for consent…which they will give you when they’re ready to see you. My district was not specifically playing games (some districts do), but it took nearly a month to even get an appointment to talk to someone to sign the paperwork. Once we did that, however, everything went very quickly. My son’s neuropsychologist said to keep on them and she said to call her nurse if they get difficult (I’m guessing she’d do something scary, but I don’t know what since it was unnecessary to ask for help). Special education is governed by IDEA, so search for more information on your state’s process and federal guidelines from IDEA for details if your school district seems to be poky in the evaluation process or not getting back to you promptly.

In the big picture, special education is for children who 1) have a disability that prevents them from learning or fully participating and 2) they can be helped by special assistance. It is pretty broad so that a visually impaired student who is a genius can still get help as can the child without physical handicaps that has a learning disability. It seems like each state sets its own criteria. In Wisconsin, the “worksheets” for eligibility are found here: http://sped.dpi.wi.gov/sped_eligibility Check your state’s Department of Public Instruction or whatever the equivalent name is in your state for more information.

My son did not qualify for help, but in order to learn whether he qualified or not, they had to evaluate him. My school district has an “autism support team” which means they are experts in educational autism and support services. A social worker spoke to me because they need to know about everything from birth onward and observed and interacted with him in class. My son was also observed and played with by a speech therapist, an occupational therapist, and the preschool coordinator person from the city, all of whom are autism experts.

Once my child was evaluated, we had an IEP meeting (okay, ISP, but even they were calling it the same thing). They all went over their reports and decided, after looking at the checklist, that he was too successful in the school to qualify for services. The trouble with “educational” autism as defined by Wisconsin, is that it hinges on having trouble communicating, which is not a problem my son has. Without a problem communicating, they’re pretty much out of luck, even though he could have used some help from the occupational therapist to help him with social skills. The good news is, while he will not get services from the school district, they are available to consult to the school. We also learned some very helpful tips which have helped immensely. One thing we were focusing on was the “autism” part of his diagnosis. What he really needed help with was the sensory processing issues. If we could help him calm down, he would be in a better position to listen more effectively in class and could thereby learn the skills. They also would remain available for his teachers throughout his school experience to consult if they had questions.

At first, it broke my heart that we weren’t going to get any help. The psychologist said when we got diagnosed that we needed a PROGRAM. But the funny thing was, our son was getting better without such a program. What he needed was understanding and teachers and family who loved him. He had that in the school we selected and in our family. Had he attended the large school across the street from my house (3 classrooms per grade!) and later the monstrous middle school (it’s huge!), he would most likely have fallen through the cracks. Temple Grandin, who has Asperger’s, apparently attended a regular elementary school, but the difference was she, like my son, attended a small elementary school where everyone knew her. They just got used to her being different and worked with it. She did not have problems until she went to a much bigger high school. Because of that, I think it was easier for me to calm down about the lack of help offered.

But the visit was not a total loss. The school district did have lots of tips that we implemented as soon as we could. We immediately got him a pair of industrial-type ear muffs. They were not very expensive and seem to help a lot because they filter some of the noise he hears; he can even have a conversation while wearing them. We will be purchasing a special seat that is kind of like a yoga ball disc that fits on a child’s chair and supposedly helps them focus. Apparently these seats can help all children, not just those on the spectrum, so he may be a demo child for seats throughout the school. The district also assured me that we or his future teachers could always contact the team for help, so we were not tossed into the sea with no help at all. In the end, diagnosis does not mean the end of the world, nor does (necessarily) not getting help with your diagnosis.

However, in your child’s life, you know in your heart that your child’s education is being adversely affected, and that he or she does need help to be successful in school, you can always appeal a decision. In our case, we could not because the trigger in our state is not being able to communicate effectively; your state may be different. Read the guidelines carefully and speak up if you disagree with the finding. There are formal appeal processes in place if you find the school district’s decision does not seem appropriate for some reason. As for myself, I am thinking about advocacy: the state of Wisconsin’s definition is inadequate for children who have High-functioning forms of autism such as Asperger’s (Asperger’s kids never have a developmental delay in speech) and for kids like my son who spoke late, but figured things out. But how kids on the spectrum speak is an issue (does your first-grader like to talk to a kid who talks like a textbook?) because making friends is definitely important in social development. In my son’s case, his peers accept his differences and he is not ostracized, however, many children who have high-functioning autism are treated as being “different” and thus have trouble making friends. Social isolation is a form of bullying and if it can be prevented by helping the child to learn how to be a “regular kid,” some of the negatives associated with being on the spectrum may be curbed a little bit with formal assistance in some way. Putting the financial burden solely on parents when other disabled children get assistance seems unfair especially when I pay my school taxes the same as everyone else. That’s why I hope to get more involved to help lawmakers understand that not all autistic children are the same, but many could benefit from having formal social skills training programs within the school district to help them when they are otherwise deemed “fine” from an educational perspective.

If you or someone you love has Autism, check online for various groups in your area to support you. In my case, we have “chapters,” but the nearest regular support groups are near Madison or Milwaukee, neither of which is convenient. I have, however, found an online group http://health.groups.yahoo.com/group/AspergersAndOtherHalf which is extremely helpful for spouses of Asperger’s husbands (yes, if your spouse is diagnosed, you will need help, too). As many of us also have children (and in-laws…) on the spectrum, we can often understand each other in ways no one else can. I hope to look into finding out how many kids are like my little guy in our area and starting some sort of support/therapy group for the parents and the kids. One of the worst things about having a child and husband on the spectrum is how isolating it can be (they can’t go out all the time, but I may want to!). Over time, you learn to do what you need for yourself … and the two of them can be happy at home (seriously!).