School won't recognize diagnosis.

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I'm at a loss at what to do. I've begged for help from this school system (2 years) and they told me it had to start with a diagnosis. I finally talked my husband into getting the kids evaluated and one (the 9th grader) was diagnosed with Asperger's and ADHD (predominantly non-attentive type) and mood disorder NOS and the other (Pre-K) was diagnosed with Asperger's and phobias, and possible PDD NOS. I was so relieved to finally be getting some help, and now the school system tells me that they're sorry, they don't accept medical diagnoses for these disorders, they will have to decide if they want their team to evaluate them or not, and their team will be the ones that decide whether or not my children get any help. Is this how it normally works? I am so frustrated.

CCat

Last edited by CCat on 07 Oct 2010, 1:49 pm, edited 1 time in total.

I'm in Canada, so I don't know your laws, but I do know a lot of Aspie parents have had to get to know the law indepth, in order to advocate for their kids in the States. I'm hoping other from the States reply here to tell you the legislation you need to get copies of, so you know your child's rights.

Can they legally refuse this diagnosis? The law should be able to tell you that. In the meantime, I would go over the head of whomever you spoke to at the school. Go up one level at a time and keep going - that includes going to your government representatives with carefully worded letters appealing for their assistance and emphasizing the urgency for your child. I would capitalize on the media surrounding bullying right now (a child who struggles in school is a bully magnet) and on the media surrounding Waiting for Superman in terms of the quality of education your child is receiving (ie. how can he receive an appropriate education if they won't recognize his diagnosis).

The key is to simply NOT ACCEPT their answer. Keep pushing higher and higher until they fold.

I understand your frustration, but don't assume that their need to evaluate means your children won't get help. Medical diagnoses are different from educational diagnoses, but a medical diagnosis can help. You need to sign a permission to evaluate with the school system. The school district then has to evaluate your child, or file for due process to show why there is no reason for them to evaluate your children. Since you have a medical evaluation showing these diagnoses, the school district would not be likely to win a due process hearing stating that they didn't have to evaluate your children. The thing is, you first have to sign the permission to evaluate - nothing you ask them to do orally matters - it must be done in writing, and it should be done on their forms! If they won't give you their forms promptly, write a letter stating that, as they know, you are concerned about your child [insert child's name] progress in school. Say that you had your child evaluated privately, and your child was diagnosed with [insert diagnoses]. Say you want the school to do whatever evaluations are necessary in order for your child to receive the necessary accommodations and specialized instructions he needs, and that this letter should be considered permission to evaluate in accordance with federal and state laws. Say that if there are any forms they want you to sign, they should forward them to you immediately, and you will sign them, effective this date, and the time line for the evaluation to be completed should run from this date. Keep copies of everything you send. Check on Wrightslaw to see if they have any sample letters you could use as a guide.

Don't give up! They might be trying to wear you down, but if they see that you aren't giving up, you will get your children at least some of the help they need.

Ok, I see you are in Illinois.

You need to send a written request to initiate a case study. Send it to the superintenent, principal, teacher, and special education coordinator. Send an email or letter.

Wait for the response. They will schedule a meeting and have you sign a release stating that you allow them to start a case study.

According to IL law, they have a total of 60 days from the day you sign the release to the IEP evaluation meeting.

Supply them with all the test reports you have. They should then determine if additional testing is needed. Depending on how extensive your private testing was, they may wish to do a few more tests. It is unlikely they will redo tests that were already completed.

What the school might have meant, is that they cannot just give you the IEP without assessment of the documents and a case study. It is true that just because a child has a diagnosis does not mean they require special services. The school must do the case study to determine if the child requires special services.

When they schedule the IEP determination meeting, make sure that the doctors that tested your children are present for the meeting. They will be very helpful in the meeting.

Only correspond with the school in writing. Document everything.

Un fortunately it is basically how it works although if you asked them for help before they should have already done their evaluations and you would be at the point of receiving help by this time not still trying to get them to recognize that there is a problem. From the posts I've seen on this board, there are schools and possibly entire school districts that seriously drag their feet (or worse) about providing the services that they are legally obligated to provide.

To reiterate a bit of what bjtao said - in order for your children to receive services from the school, they must meet specific criteria laid out in state and federal law. While the result of the medical diagnosis may plainly state that the child has a certian condition, the school is only obligated to provide services if the child's condition interferes with child's ability to get an education. That sounds pretty subjective but from what I have seen so far with our school the criteria are designed to be at least somewhat objective.

Good luck and don't give up!

Thank you all for the very valuable information. The high school seems more accommodating and the counselor is meeting with me tomorrow to go over the diagnosis and recommendations for my older child. I had already explained to the high school that my son is very self-conscious and doesn't want the other students to know. He appears to be gifted AND have asperger's. He consistently scores in the 99th percentile on standardized tests, but can't figure out how to dress for the weather, keep track of his belongings or figure out how to get from class to class. Homework rarely ever makes it back to the teacher, and he has a hard time making and keeping friends. I want him to have help with his organizational skills (I have none, so I'm no help), and I would like it if the teachers cut him a little slack and were a bit more understanding when he gets to class with the wrong books or a little late. I don't know what to do about the homework situation. We're not sure if we want an IEP just because it might attract more unwanted attention to him, but I do want the teachers to be aware of his situation so they won't be so hard on him.

My daughter has the more classic autism signs like meltdowns, screaming, hand flapping, eye contact avoidance, yet she's very verbal. She will go mute and hang her head when criticized, scared or nervous. She had long hair that I kept braided, but she walked with the braids pulled across her eyes, so we had a long talk and she decided to cut them since she started Pre-K. She's got a darling little bob now and we donated the hair to Locks of Love, but it was still very hard on her because her hair was her security blanket. I hope I did the right thing by cutting it. She had a few tears roll down her cheeks, but she never cried out loud and has never mentioned it again.

All of my kids have signs of Aspergers and/or ADD, but maybe not enough to be diagnosed. They all had a lot of trouble when they got to the age where they had to organize and keep track of their own belongings at school, about 4th - 5th grade.
I wanted to get early help for my daughter so she would be prepared when that time came and would have an easier time keeping her things together. Out of all the kids, I feel that she needs the most help. I will get that written request done and let you know how it goes.

Thanks again,
CCat

All of that could have been taken out of a chapter on life here.

On the homework question, the answer we have is to schedule him into an academic support period. He has to give up an elective for that, but he has agreed it is worth it. Basically, the school wasn't particularly open to changing their assignments or rules because of his AS, but we found that when the teachers are working with another teacher, they will adapt a little. In the academic support period his teacher reviews his assignment book with him daily, and once a week goes through all his folders with him to look for things he may have forgotten to do or turn in. Since he has a writing co-morbid, this is also when he'll work on finishing, typing and editing assignments for his other classes. After all that has been done, he sits down and gets a head start on his homework.

All my son's teachers are also asked to post to the homework systems the school uses (phone system, school loop, etc) so that my husband or I can check it daily as back up to our son's recording, but we don't have that as a requirement, just a request.

I could go on long rants about how unfair the grading system at my son's school is for an AS child, but I haven't been able to affect any change on it, so I guess there isn't much point. I've heard many AS express that grading rubrics before college are pretty much illogical; we have the kids who actually look forward to having the entire grade hang on one test or paper, instead of being a hodge podge of grades on note taking, homework, and other work that is designed to help integrate the material, but doesn't actually show if one has integrated the material.

Sounds familiar here, too. I'm still working on the medical diagnosis for my teenager. The school doesn't really see a problem. I could force the eval with school but I think I'll be in a better position once I have the medical piece in hand.

In our case what I really want is similar to what you cited... a little tidbit of understanding from teachers, mainly. When group work goes south, when she doesn't understand the instructions that everyone else seems to get right away (and asks too many follow up questions)..etc. I'd just like them to have in the back of their minds that she is not being deliberately difficult or rude. Because when you're that smart at some things, people just can't figure out how this other stuff could be anything other than intentional (or the result of being spoiled).

I'd also LOVE a little help somewhere in their system for things like yesterday's pep rally - a disaster of free seating in the gym, noise, and a kid with no social group (where does this child sit? with whom?). Very stressful. Seems like something could be set up for times like this.

Anyway, good luck to you and I'll be following your posts to see what happens.

petrel & CCat

I would encourage you to seriously consider pushing for the school evaluation. Hoping that the teachers will just "cut them some slack" may not be a very good strategy in the long run. The benefits to formal evaluation and determination from the school are many. The results are kept as confidential as possible and shared only with those involved who need to know. With a determination from the school that a child qualifies for services, you can get a plan put in place that contains as many or as few accomodations as your child needs. The pep-rally situation is a prime example. If you had an IEP that stated specifically where the child should go during these events, perhaps with a trusted teacher or aide, then the trauma could be avoided. Without the school evaluation, you have no leverage to effect the changes you see are needed in order for your kids to be more successful. Some teachers may be more accomadating once they know a child has a medical diagnosis but you're kinda left with the luck of the draw.
I'll get off my soap box now, sorry!

Just keep in mind that your child is a number representing a profit or expense to the school, but they are binded by law to follow certain protocol. I have nothing good to say about the public school system when it comes to assessing and addressing individualized needs.

Public school is really hard on AS kids...have you thought about homeschooling, or private school. If you cant do either, you need to hire a children's disability advocate to help you make them do what the law requires them to do.

This is the truth!

I came to ask myself if I wanted to be frustrated, angry, and resentful ON TOP of all the issues with my daughter? No I didn't so I withdrew her from public school. They probably thew a party when I was gone, they hated having to come up with new excuses all the time on why they couldn't follow through on what the law required of them.

I sorta know how you feel. My son was diagnosed with HFA, his Dx sheet said behavior consistant with HFA, he has also been co/diagnosed as hyperlexic.
This was done by a neurodevelopmental pediatrician, and even though the school has seen the paperwork, and DX sheet, they still have him as "possible autistic" only because the school hasn't evaluated him for it.
In fact, a few weeks ago, I went through the process of trying to get him an aide. While I was there at the process of filling out paperwork, and answering questions, the woman just stops and looks at me and asks me "Are you sure it's autism, that looks like adhd to me, I know cause my son has adhd"
"Yes I'm quite sure he has autism".
"Are your sure, he's hyper, it looks like adhd to me".
This went on for a good bit. Until finally I...
"Yes ma'am I'm quite sure it is autism, he was diagnosed by a neurodevelopmental pediatrician who has thirty years experience in the area, who has credentials to diagnose him. Where did you get your degree from to do that?"
Then handed her the paper that proved it, and that finally shut her up.

Yes - unfortunatley, there is a difference between a "medical" diagnosis of Asperger's and an educational evaluation and finding of "autistic spectrum disorder" (which is what they term all types of autism as here). The one thing that you really must try to avoid if your child is also having behavioral issues (outbursts) is an emotionally impaired designation. We made so many mistakes early on with the public school system (not requesting things in writing, trusting their judgement as "educators" and individuals who see children with "issues" on a routine/regular basis and know/understand how to work with them, provide appropriate accomodations, etc.). In my experience, most really aren't as qualified as they would like to think - especially when it comes to Asperger's and girls. And, most school districts DO NOT have appropriate policies and programs in place for children with Asperger's and/or early mood disorders (our child has both). I agree with the others - begin (request in writing) the assessment process, educate yourself on your child's RIGHTS and the districts RESPONSIBILITIES and consult with an advocate. We recently brought an advocate on board, and it has helped immensely.
Good luck!

I got a very nice call from the preschool and the special ed teacher there said that my daughter is doing quite well in the Pre-K setting and the teachers noticed that she's making great strides, so for the time being, they want to leave her in that class. She's made friends with two little girls who "mother" over her, but they're both a year younger so they won't be with her when she starts to Kindergarten next year.

She's doing well academically, but she scrunches her shoulders up and tilts her head to the side and looks down at the floor when they ask her to do something new, change activities, a new person comes in, etc. So, most of her difficulties seem to be social. They are going to make up picture cards for me to use for her at home to help her transition from activity to activity, such as combing her hair, picking up toys, brushing teeth, things like that.

If there are any difficulties next year, then they will evaluate her. Half-days may be an option for her, also speech therapy.

My sons teachers had nothing but kind things to say about him. They all thought he was exceptionally bright and participated well in class, even that he took good notes! My husband and I were dumbfounded. All we've heard for the last four years were negative reports and suddenly they think he's doing very good. We asked for quite a few things in writing and they said they would get back to us. Here is the list we presented them with:

We would like an extra set of textbooks at home.

Our son is not a good note-taker, so we would like for him to be able to get a copy of notes from another student.

He could stay after school most days until 3:15 for tutoring or supervised homework.

All instructions for papers, projects, homework should be in written form - He has a poor memory.

He has a lot of anxiety about school, and when he’s stressed, it makes his forgetfulness worse. It may not show, but he’s very hard on himself. We would like for his teachers to be aware of this.

He is often thought of as being difficult or defiant, but he is just very literal. I would like for his teachers to understand this.

The guidance counselor suggested that maybe our son could be allowed to leave his last class a few minutes early so she could check to make sure he had the correct assignments and materials for homework gathered together to take home.

Our biggest concerns as his parents are:

1. That he will decide he doesn’t like school and not go to college.
2. That his self-esteem will suffer from his failures.
3. Bullying (although this year has been free from that so far).
4. Depression and anxiety about schoolwork.

I also gave them a lot of information about him and the way he learns and thinks so they could understand him better. The art teacher said that our son had overreacted last week when another student took his eraser from him, and he was glad to have this information so he could understand why our son overreacted.

All the teachers claimed to be knowledgeable about AS and said they would be willing to work with him. I hope I did the right thing...I can always go back later if this doesn't work, can't I?

We also talked about him taking a college course this summer at the community college. Our high school has a dual credit program with them and we thought maybe a taste of college would get him motivated when he sees how different it will be. He wanted to go to IMSA so badly...so we're hoping this will help him feel independent and help make up for the fact that he won't be able to attend IMSA.

There's also a social worker that will be meeting with him who may decide to do a pragmatic speech test. She wanted to know if he had any social difficulties, which he does, but it's much better this year. They also suggested that I should see if he would be interested in scholastic bowl. There's another AS student on the team, but of course they didn't disclose who it was, but they said that he enjoyed it a lot.

I'll keep you updated on how things go...thanks for all your help.

Sounds just like my situation. Mildly gifted with mild AS, or at least that's my guess. Still trying to get a dx and such, too much else going on right now. The giftedness hid the AS from teachers and the AS hid the giftedness from my classmates, for the most part. Luckily, I've got decent organizational skills. I don't hand in my homework often, but that's more out of contempt for the school. My big issue with AS has always been socially, trying to adapt, fit in, and get along.

I only just learned about AS in eighth grade. Like I said, it was hidden from the teachers.