Asperger's : Me Vs. School Officials - What Would You Do?

Updated on April 28, 2010
J.C. asks from Kennebec, SD
55 answers

I have a four year old daughter who has all the classic signs of Asperger's - refusal to make eye contact, weak motor skills, delayed speech, repetitive behavior, aversions to certain sensations and textures, and refusal to play with kids beyond her brothers. I had asked back in November when the special education department began testing for speech issues that they start the process to evaluate her for Asperger's since I had seen the symptoms for almost 2 full years at that point. So far they have only tested for Occupational therapy, Expressive Language, and Speech issues; since I was seeing this as them avoiding the testing for Asperger's I contacted the Superintendent of Schools to see what my next steps were in order to get this moving. I was referred to the head of Special Education for the district, who then listened to my concerns and said she would look into it. That was yesterday, and my daughter had speech therapy today. Nothing was said to me at her appointment this morning, so I figured the email from the head of the department had not been received.

Fast forward 3 hours: I get a call from my daughter's speech therapist stating that she had received an email from the head of Special Ed 2 hours prior to the appointment regarding my concerns that the request for an Asperger's diagnosis was being ignored. Why did she not bring this up at the appointment when we could have signed the documents to get the testing started instead of waiting until I would not be in for 5 more days? This has me concerned. The therapist even told me that she had never heard me request the Asperger's testing, even though I had requested it every week up until the beginning of this month. I am now so upset with this school system because my daughter has been held off for almost 6 months, during which time she could have been getting the additional intervention to ensure she would be able to handle the transition to preschool this coming fall.
Because of this situation I am looking for advice from other mothers. Would you consult with a higher state authority over this and state your concerns that the parents are not being listened to and risk being singled out as "that mom" by the therapists and special ed teachers? Would you consider homeschooling and having an outside specialist do the testing and diagnosis? Or would you think about contacting an attorney regarding your rights to ensure that the situation gets noticed? I really need your advice folks, and I hope you can shed some light on what steps you all think I should take.

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So What Happened?

I have gotten a lot of answers from people who are saying the school cannot diagnose, but it just proves that they are not really reading my post. I am not asking the school to diagnose, I am asking them to order the testing from the appropriate authorities under the IDEA laws. This is where I am getting upset with them. If you are going to comment on my posting please ensure you understand this information because i'm getting fed up with being treated like I'm ignorant because others refuse to read the post in its entirety. I am only trying to get an idea of how to handle the next steps and get my daughter the testing she needs in order to properly treat her and educate her.

Featured Answers



answers from Madison on

My old district couldn't test for Asperger's/Autism. That had to go through the family doctor. If a parent requested we had to test for Special Education needs but that did not include diagnosing Autism spectrum disorders.

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answers from Chicago on

Hi J.. I'm so sorry you are going through this.

If I were you, I would absolutely keep your daughter in school so that she can retain the services (Speech, OT, etc.) she is currently receiving. Even if she was to be diagnosed with Asperger's Syndrome, that may not actually change the services she already gets. That may sound surprising, but the schools generally do not offer programs to help with socialization or any of the social symptoms. Speech and OT are very typical services.

Next, it's important to know that Asperger's Syndrome is, typically, not diagnosed before the age of 5. It would not have been possible for your Pediatrician -- or any specialist -- to give her that diagnosis 2 years ago. If you had seen a Specialist, you may have received a "Spectrum Disorder" diagnosis. But again, it's possible you would still have the same services at school that you have now.

Yes, you should have your daughter evaluated by a Pediatric Specialist. It sounds like a good deal that the school district is able to pay for this -- perhaps you should continue to follow this path. The big question is: what other services could your daughter receive with a Spectrum Disorder diagnosis (including Asperger's Syndrome) that she is not getting now? If it sounds like critical services, then perhaps you need to seek and pay your own Specialist to get it done faster.

When it comes to your daughter's well-being, don't ever hesitate to be "that Mom!" Be assertive and direct with the school district (without being rude or mean, of course!) Make sure that they have started the process for your daughter's evaluation and get a timeline from them.

My very best wishes.

5 moms found this helpful


answers from Boston on

I am answering as a teacher, not a mom with a special needs student, but I hope this is helpful.

First of all, there isn't an "Aspergers test," as you no doubt know. It's a spectrum disorder, and actually, the new DSM won't even have the aspergers classification, it will be lumped in with other autism spectrum disorders. It is possible that an official diagnosis of Aspergers might qualify your daughter for additional services, it's also possible that it won't, as the issues that are being addressed by the services she's currently getting might be all she qualifies for.

Also, this is what happens in virtually every school system (I know, I work in a really great one). You need to worry about only your child. The system needs to worry and coordinate care for hundreds of kids, and likely with insufficient funding. You can try going to a "higher authority" but I don't think that it is going to make a difference. What it sounds like is that you want the system to do more, but there's no negligence, no violation of an existing IEP, etc. In fact, the fact that the speech therapist called you right after an appointment instead of waiting for the next appointment seems to me like they are trying to be responsive. I know five days seems like a long time, but if your child really is on the autism spectrum, 5 days wait in terms of theraputic intervention is not make-it-or-break-it.

I would NOT recommend homeschooling. It's helpful to have the perspective of many different teachers. Also, it will be harder to get services when you are homeschooling because you won't have multiple adults advocating for services (because yes, teachers often advocate for services through special ed for our students). I don't know about the legalities, but my guess is that it would also be more expensive to get services when homeschooling because the district only has to provide services, not the exact services that you want. And while that might seem unfair, remember again that the district has to balance the needs of your daughter against all the other kids for a limited amount of money and therapists.

My best advice is two-fold. You continue to be the best advocate that you can be for your daughter. Ask again and again for the services you think she needs, and explain why you think she needs them. Be prepared to do this for a long time. AND be open to hearing the answers that they give you and recognize that they are working for the needs of many students. And continue to check in with other moms about perspective on this issue. I think its really easy to get so caught up in our kids that we forget that our kids aren't as "urgent" to other people.

I hope that this was reasonably helpful. I don't envy your position. I hope you get some results you are looking for soon.

3 moms found this helpful


answers from Chicago on

You've had a couple responses I agree with, so I won't re-hash details. Yes, she needs to be evaluated by a Medical Doctor who is a Specialist in the field of spectrum disorders. Let the school pay the $3,500!

However, I wanted to mention that homeschooling may not be your best course of action. I'm not sure why you think she has aspergers vs. high-functioning spectrum disorder (etc.) However, high-functioning children on the spectrum require regular access to social role models. That means, she needs to be around peers on a regular basis. In this case, she does need more than you and her family. She must be around peers who can model "appropriate" social interactions and she can pick-up some of these behaviors.

2 moms found this helpful


answers from Madison on

I took my daughter when she was 3 years old to our school's Kindergarten round up because I was concerned about her not speaking. The speech teachers tested her and she was at the severe level (in our state the school district has to offer sevices to kids in need starting at the age of three). When she was 4 they put her in Early Childhood and asked me if they could test her motor skills, which they had noticed weren't that good. She tested positive for hypotonia and was put in OT/PT. She is now in the 4th grade and has passed out of OT/PT but will remain in speech yet next fall, in the 5th grade.

We noticed our daughter was different from a very young age; almost a baby. Her Pediatrician wasn't concerned, even after we ticked off all of our complaints and the problems we saw with her. Other than the speech and OT/PT, the school district didn't see any "problem" and didn't advise us to do any follow up. This was even after the speech teacher went to her daycare and helped the teachers there with ways to help my daughter communicate, which was one of her biggest frustrations. But that didn't address her anger, her hitting herself, banging her head against the wall, the tantrums, the running away and hiding when things overwhelmed her, the crying spells, the inability to interact with children, the noises/sensations that seemed to bother her.

The summer before she started Kindergarten, I left my full-time outside job to open my own business from home. Little did I know what an explosive summer that would be when I took my daughter out of daycare. We had no way of knowing that she absolutely thrived on a constant, rigid schedule. I also had no idea that I would have a little lemur permanently attached to the hip the entire summer. She couldn't do a thing--and I couldn't go anywhere, not to another level of the house, another room, the bathroom, or even outside--without her adhered to my hip.

My husband didn't believe me. Until the day he was home sick right before Kindergarten started and actually saw how our daughter was behaving. Then, he finally agreed to let me take her to see a Childhood Specialist.

It was the best thing we ever did, for ourselves and for our daughter. Technically, the Childhood Specialist couldn't "diagnose" our daughter, because the diagnosis isn't in the handbook. I brought up the issue of Sensory Processing Disorder (I'd read about it, and I have a couple friends whose kids have it), and she agreed that that was exactly what my daughter has. She is on the very high-functioning end of the spectrum. So much so that when people meet and interact with her, they have no idea she has SPD. Part of that is from my working with her; the Childhood Specialist; and the school (because SPD isn't an acknowledged diagnosis, they can't officially put it in her file but they are aware that she has it.) The Childhood Specialist treats my daughter for anxiety and OCD, which she also has.

So from our perspective, it wasn't the school who evaluated and diagnosed our daughter--in fact, I don't believe they are capable and/or can do so by law--it was a Childhood Specialist, which is another name for a Child Psychologist. And the only reason she was diagnosed at all was because I kept doing my own research into why my daugher was acting the way she was and kept pushing for answers. It was a profound relief when SPD was finally confirmed.

Our school knows about our daughter's "specialness" and does everything they can to help her. Besides the speech and OT/PT, she takes part in an invitation-only girls group, where 6 girls get together once a month to have fun and do things together (social interaction). I also put her into special peer classes when they're available. Last year, she was in one for making friends. This year, she's in one for stress and how to handle it. Last fall I entered her in the Girls On The Run of Dane County, which is an 8 week running-training course of a group of 8-10 girls who train to run 5ks. She loved it so much, and felt like such a part of a group, that she asked to do it again this spring, so I signed her up. She has trouble with math, so once in a while, she gets invited to Math Club for extra help. Earlier in her school career, she needed reading help and was in an extra reading club; now she's reading about a grade or two level above where she should be.

My daughter still has trouble with friends/friendships/making friends, and we work on feelings and self-esteem all the time. Her elementary school has been phenomenal at helping her (she had an IEP), and I'm hoping as she transitions to the other schools throughout her school years that she will have the help she needs as well.

Unfortuantly, when it comes to the Autism Spectrum disorders, it's really up to the parents to get their children diagnosed and get them the help they need. My daughter is totally mainstreamed in school and, other than the Early Childhood intervention, has never partaken of the Special Ed rooms.

In 2012 a new edition of the Psychology handbook is coming out in which all of the Autism Spectrum Disorders will be lumped together under the same umbrella. Will that help in getting more children diagnosed, or get the help they need? I don't know. Our health insurance pays for our daughter to see the Childhood Specialist once a month, and right now, that seems to be enough therapy. I also used to take her to a Children's Wellness Clinic, where she saw a doctor who was familiar with SPD (she son has it), a dietician, and an exercise specialist. She no longer goes there, and we could only afford it because our insurance covered it. Ditto on some outside therapy I took her to for awhile.

The first thing you need to do is have your daughter tested and evaluated. Then you can go forward from there. I understand your concern, and yes, you'll want to get help for your daughter as soon as you can. It won't be easy, and it won't be cheap. We know. Even with insurance covering the doctors/extra sessions, it doesn't come close to what we've paid out through the years in helping our daughter ourselves.

Hang in there. If you'd like to chat more, please, don't hesitate to contact me.

1 mom found this helpful


answers from Minneapolis on

First of all, I would take a few deep breaths, and try to disengage yourself from this situation for a week.

Next, remember to assume that teachers are professionals and are trying to do their best to work with your child. Alienating school staff is not a great idea. You may be reading things into their actions (he didn't send the email right away! She never said ___ to me!) that could be explained by the professionals in question being busy people with large case loads.

Third, please note that both speech therapy and occupational therapy are things that children with autism often receive. So even if she were to magically get a diagnosis of autism tomorrow, she'd still be receiving speech and OT. Frankly, I'm not sure what else she'd receive. And it's not like a diagnosis would lead to some sort of cure.

Fourth, pursue the possibility of autism with your child's doctor, and continue to request that she be screened for autism at school. When she goes to kindergarten, you want her to be in the right school for her, and a diagnosis of autism will change which school she goes to.

Fifth, consider the possibility of seeing a therapist for a while, to help you deal with your grief about having a child with special needs. It really is stressful, and it can be hard to let go of what your dreams were for your child's future.

I wish you all the best. You sound like a great mom, and I am sure that your daughter will be fine.

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answers from Chicago on

I took my sons both to a Neuropsychologist. They tested for everything. Once, I did that the schools had no choice but to listen. I have a asperger's adhd, sensory integration dysfunction, severe mood disorder for one son. He is 7 and in special ed now.

The one things schools hate is a parent with too much knowledge of the system. Google parent forums for special needs children and schools. I went to an information session and that was all I needed. I was their worst enemy.

Also, put everything in writing. The local health dept can help with a diagnosis and force the schools do the the right thing.

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answers from Minneapolis on

Dear J. C.

First I suggest that you calm down. Then going forward, make sure your requests written. Email works fine, just ask for a read receipt or acknowledgment from the person you are sending it too.

You are so lucky to identify these traits in your daughter so early in her life. My soon to be 18 year old son was diagnosed with Aspergers at age 15. Many are diagnosed in first or second grade. So you are ahead of the curve.

Only by having my son tested outside of school was I able to get help in school and that took some time to get organized. In Minnesota, the schools have 45 school days from the formal request to get the testing done. That's a full quarter - 9 weeks. I remember that feeling of panic, that nothing was getting done, because I was counting the weekends in the 45 days. It was December before they got an IEP in place when I first brought paperwork in in August.

Don't stop talking, just be sure to back it up in writing. Getting the occupational therapy and speech areas going already is progress. Take comfort in the fact things are started.

Additionally, you should get yourself a therapist. In accepting that your child has Aspergers you are likely to deal with frustration, grief (at the loss of the person your child would have grown up to be without the Aspergers), depression and relief at having explanations of unique behaviour. Family therapy may be good too so her siblings can understand and have an outlet for their feelings.

One last thing is that Aspergers kids struggle socially. It is important, though not always easy, that they be with other kids in the school setting to learn how to be social. Home school might be easier, but I don't think it's best.

Hope this helps a little. Good luck. You are obviously a good mother who's a strong "mama bear" protecting her cubs.

MBB from Minnesota

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answers from Bismarck on

I have a son who is somewhere on the spectrum for slight Asperger's. A lot of the therapies that your daughter is receiving are the same that help Asperger kids. We are lucky that the special ed teacher also does a "social group" therapy for kids.

Here are a couple of observations I see in our situation: schools want to well by their students and are often limited by resources. The other issue can be communication. For example, the school's policy may be no psychological testing until age 5, but somehow everyone else thinks someone else has communicated this with you (just an example). Also, things DO tend to take time to test and implement.

Continue to advocate for your child. And yes, be THAT mom!!! Our school has documentation of what special needs children are required to receive and I receive a copy of it and read it every year.

In our case our son has "Asperger Tendencies" from the school psychologist's testing with him; but he fits way better into our school's definition of an ADHD kid, and our school is much more "comfortable" with an ADHDer than an Aspie. Tony Attwood's (author of The Complete Guide to Asperger's Syndrome--very good book) advice to parents is strictly practical:

"Use the diagnosis that provides the services."

Good luck!!

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answers from Rochester on

I'll start by saying I lived in Chamberlain for five years so I understand how difficult it is to find resources in that area without having to go to Sioux Falls. From a parent's perspective I can completely understand your frustrations, anger, and everything else. From a teacher's perspective I would echo others' advice to give this some time. The process of getting special Ed services is a very long process. There are federal laws as well as state laws the really guide what a school district can and can't do. It also depends a lot on what school and local resources are available. I have two students who are right now being referred for special Ed services. One of the steps we have to take is to implement several different interventions and document how those interventions work over the period of several weeks before we can actually do the majority of the assessments. It us frustrating from a teacher's perspective as well as for parents. I have no doubt that at least one of these students needs extra help, but I can't speed up the process. Continue to advocate for your child, but back off a little bit. Don't bring in an attorney unless you are absolutely sure there has been a right violated or a law broken. Get as much information as you can about the referral process, identification process, state and federal laws, and local resources that you can. Part of the situation could be that the district's hands are tied with what they can and can't do. Put all of your requests in writing. That will be vitally important if you do decide later down the road that you want to involve an attorney. Speaking from experince as a tacher, things will go much smoother for you and your child if you work with the system instead of against the system.

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answers from Miami on

Just read your "so what happened"...
PUT YOUR REQUEST IN WRITING! If you don't send it in writing (not email) there is no validity to the request. You should request an Asperger's rating scale. Just FYI- there is no "battery" for assessing Asperger's. It is a clinical assessment made by a doctor. Call a neuro and schedule an appointment. When you have the diagnosis in hand, contact the school to request a meeting to review the information and to request additional supports, if appropriate.

Ok... first and foremost, school's can't "diagnose" Asperger's. This is a medical condition that needs to be assessed by a neurologist or neuropsychologist. So, yes, make arrangements for an outside professional. If your daughter is on the spectrum, you will want an on-going relationship with a neurologist. As a special education administrator I can tell you that once you contact your state dept of ed and/or a lawyer, all "spontaneous" communication between you and your child's providers will end and they will speak to you only in the context of meetings with both sides being represented. I have been doing this for a long time and you are setting yourself up for an adversarial relationship before she even starts Kindergarten! I know you are anxious, but there are processes in place to protect your child and ensure that no one jumps to a quick conclusion.

What schools must assess for are delays that significantly impact your daughter's academic progress. At this time, your daughter is likely accessing speech, OT (if she needs it) and special education support, if needed. Having a diagnosis of "Asperger's" may not lead to additional services. Schools don't operate on "diagnosis", they operate on "educational classification". Sometimes the two are in alignment, sometimes they are not. As one of my favorite speech paths once said to me, "Call it pink with purple spots, whatever. My question is... does she need speech?"

Also, what you are describing regarding your daughter's behavior may be more typical of a child with High Functioning Autism. They are not the same and need to be differentiated by a doctor, not a school team.

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answers from Erie on

I would think you would have had your peditrician look into this when you first realized there was a problem 2 years ago.

Is there a local agency that deals with special needs kids in your area, I would contact them directly.

1 mom found this helpful


answers from Oklahoma City on

You mentioned contacting an attorney, if you have the money for that why wouldn't you just take her to her own doctor or specialist instead of using money for an attorney??

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answers from Erie on

Talk to your dr. again, and ask him/her to have a psychiatrist evaluate her. If your dr. says to go through the school district, demand that he/she make a referal for you. You need to keep a record of all conversations between you and the speech people. That way you have proof to show that your requests are being ignored. I am assuming you have to sign a sheet each time the speech person is there, describing the day's activity and progress of your child. Write on that sheet of paper, any questions you want answered. Since you get a copy, that can be your proof you have requested certain things to be done for your child. If these suggestions don't help, hire an attorney to fight your battles. The school district will be a little more helpful, I bet.



answers from Los Angeles on

I'm not sure how it is in SD but here in california we have Regional Centers that are the first step to starting the process. They can also help with finding non profits that can help. Your child's doctor should be able to help. I would start there. Take action now. Educate yourself on your child's rights and laws. It's the best thing you can do for your child. EARLY intervention is key to helping children on the spectrum!



answers from Washington DC on

It could be that while she had received the email before your appt., she hadn't really read it, or figured that she would wait for you to bring it up at the appt.

In the scheme of things, waiting another week to get things started isn't going to be hurtful to her progress, just frustrating because of the delay. I would definitely keep a record of the event, and any future events. It could be that the staff member is overworked or just lazy about paperwork. If a delay happens again, I would bring it to the attention of the staff manager or the school board.

Good luck


answers from Norfolk on

I've not had a situation quite like this, but I have dealt with bureaucracy or two and I feel sympathy for you - it's an aggravating process. It's a lot like a game of gossip where the message gets passed through so many people who only half pay attention to it, that the end message seldom has any resemblance to the original message.
I would suggest you make all requests in writing (if you have to, send them so you get a receipt when it is delivered), keep hard copies and dates of when they were sent and responses in a folder and use a notebook to document who requests were sent to, and what (if any) responses were received and from whom and when. Take names, phone numbers, email addresses, and ask for names of supervisors and their phone numbers, email addresses, etc. Become a superb records keeper. Follow up. When you sent a request and you know they received it, give them a day or so then call them asking about it's status and what stage of the approval process it is in. Ask if there is anyone else you can call to get your request escalated. If the person you usually talk to will be on vacation, then ask who will be standing in for them and handling their work load and for how long. If anyone tells you it should be x number of days to be processed, then call them back after that many days and raise heck if it has not progressed to the next level. When someone says you asked for XYZ when you asked for ABC, calmly inform them a message must have become garbled and state your original request. You need the determination of a bulldog to get through it. Sometimes I sweetly remind them the best way to get rid of me is to get my request expedited and completed. Be nice. Tell them you are upset, not with them but with the cumbersome process. They will often sympathize with you and some will even help you out.
I developed a personal relationship with a person at my health insurance help desk when I had to fight them for a covered procedure but needed prior approval in order to use it. I spoke with Emily on a daily basis for almost 6 months, but I finally got what I was seeking.
It shouldn't have to be so hard, but you can get through this. Good luck!



answers from New York on

My kids are not in school yet but are based on my experience as a case manager. I would try and work with the school as best you can but I would also get a notebook or binder and start keeping track of what you said to whom and when (a quick note about phone or in person conversations). Also, keep whatever the school gives you in the way of IEPs and other documentation. This way if you are arguing with the school system later or do need to get a lawyer then you have what you need together. In my state an initial evaluation has to be done if a parent requests it in writing (but if she has some services was this already done?). You might have to go to another doctor or specialist to get a thorough evaluation and that may cost a lot if it is not covered by insurance. Maybe a local hospital or regional children's or teaching hospital has a program? School systems vary a lot as to what they can afford to do and how quickly they can get to it.



answers from Minneapolis on

i would have her tested outside the school its documented with the state-or proffessionals that can back you up-it could be something totally different.i hear many drs.getting frustrated because ppl are doing self diagnosis on the internet-and usually are wrong.good luck



answers from Minneapolis on

You have sure gotten a lot of advice. I'm going to chime in because I am a mother of a child with AS, pediatrician, attorney, and have utilized public and parochial schools, ultimately homeschooling the final 5 years. My son is graduating from high school next month, applied to 10 selective colleges, and was accepted with merit scholarships to all of them.
This is a marathon, not a sprint. You need to understand that you will always know your child better than ANY teacher or therapist. The public school/Special Education system will be frustrating and disappointing, but you will learn to advocate for the services your child needs while accepting the inherent limitations of a government program.
Read, read, read. The more information you can get your hands on, the better parent and advocate you will become. Your child is unique, but you can get insights from many who have gone before you. Don't be surprised when you discover that you know more about AS than your "experts."
Do what feels right. Don't listen to anyone who says your child "needs" public school for "socialization." I guarantee anyone who thinks that has not raised a happy, well-adjusted kid with AS. Your child will learn social skills from people who have them...adults. My boy learned eye contact from his speech therapist and the teachers in his school who rewarded his efforts. He learned to greet and introduce from me, and he learned to carry on conversations with peers when he found one boy with similar interests who he could play with at home. He doesn't enjoy teenage drama/pack interaction, but works as a grocery courtesy clerk and volunteers as a gallery interpreter at the science museum. Adults find him mature and well spoken.
Weigh all your options every year. Remain clear about your purpose. For example, my boy would like to be a researcher/professor in the sciences. He struggles with math. From 6th grade on, my goal was that he would be competent in Algebra and Geometry regardless of what it took. The AS Coordinator said after a 7th grade IEP meeting (the month before I withdrew him from public school for good), "Mrs. M, you need to realize that these students plateau in their abilities." I responded that there are enough people in the school striving for mediocrity, and I would not join them in that.
There is something extraordinary in the mind of your child - find it, unlock it, nurture it, embrace it. By all means, don't try to cure it!


answers from Albany on

I do not have a teaching degree but worked in a private special ed pre-school for years. I have met many parents going through the very same battle in our state to get what they need for their child. I applaud you for continuing your fight, and I hope you keep getting 'mad' when you hit a brick wall. We have many wonderful programs (pre-school) here for children with specific educational needs, but parent's (even really determined parents) hit so much red tape, by the time the child officially QUALIFIES for these programs, it is only a year or so before they age out of them. I wish I could offer you some specific help, but my advice would be have your own doctor evalute and refer her to a pediatrition who specializes in learning issues, and DO NOT give up. Here we have a congressman with 2 autistic grandsons who will respond to frustrated parents, you could try this. I'm sure you're already doing this but keep learning yourself how to teach your own child. If you can afford it put her in a private special ed preschool, at least call the nearest one and tell them your story, they may also be able to help. Good luck, your daughter is very fortunate to have such an advocate.



answers from Dallas on

I am not sure on what advice to give you but I can tell you about my daughter and her experience.

My daughter has PDD/NOS, Sensory Intergration Dysfunction & Static Enceph. She was born with Torticollis and started PT at 2 months, she later developed Plagiocephaly and needed a DOC Band (ins did not cover this) it cost us $3000 cash! At 9 months she developed motor tics and started seeing a Neurologist for this. At 15 months her Peditrician noticed a Speech and Motor delay and recomended us to ECI (Early Childhood Intervention) who started coming to our home and working on Speech and OT. We also saw private Therapists for Speech, OT and PT in which Speech is not covered by ins and we pay out of pocket $65 a week.

My daughter at her 2 year apt failed her Autism check list at the Peditrician office where they then sent me to the Child Study Center where she was then diagnosed by them with PDD/NOS, Sensory Intergration Dysfunction and Static Enceph. (brain damage but how the brain is wired). Took us months to get into The Child Study Center - BUT THIS IS WHERE YOU ARE GOING TO GET YOUR DIAGNOSIS.

When my daughter started to get close to the age of 3 years old ECI started helping us get into the PPCD (Public Preschool for Children with Disabilities) program close to our home. With the help of ECI we were sched for our ARD apt and they approved her for the program. She is now about to turn 4 and doing great! We do have to go through another ARD test to see if she will get approved for the 4 year old PPCD program for next year.

My baby girl looks and acts 90% of the time like every other child and you wouldnt know that she has Autism unless you are aware of the traits or if she went into an Autistic Fit. If it wasnt for my determination to fight for a diagnosis from the first signs even with out a diagnosis all the doctors and therapists and paper work combined helped us get into the PPCD program.

Diagnosis isnt much help with insurance since Autism is considered a BEHAVIOR problem and insurance doesnt cover for those codes. As far as public school therapist are concerened....priviate therapy is SOOOO Much Better. But the PPCD program has been a HUGE help in the growth and development of my daughter.

Is she in a PPCD program at her public school? Did you get in with out a diagnosis? She is getting therapy...then a diagnosis from the school doesnt mean much.

Because if you switch schools you have to get the new school to re evaluate her for a diagnosis. If you want to get a diagnosis then go out of the public school system and go a Child Study Center or Autistic Center in your area....bring ALL your therapists paper work and eval., bring your peditrician paper work as well, etc and make an apt with the Centers and they will come up with a diagnosis for your child.

Lawyers will only cost you money and that does not help your child in anyway. This process takes time so you had to wait 5 day's...its five days. It's been two years that you have been waiting...getting an diagnosis for Autism isnt a for sure diagnosis until the child reaches the age of 5 years old. They are hesitant to diagnois Autism in a child under the age of 5 years.


NOW remember this process takes a long time have to have a peditrician perscription and if you use ECI their recomendation helps too to get into the aplication process. After that they request all medical info on your child and then you mail that in. Then they get back to you after review all the paper work to determine if the child is a candidate for coming in for an evaluation (this can take 3 months). If they feel your child meets the guidelines then you get an apt to come in and have your child evaluated which could take another 3 months to get in. Once your in your child gets evaluated and they will then give you a diagnosis.

Good patient.



answers from Minneapolis on

My son went through elementary school and although I had suspicions about something not being right (I had never heard of Asperger's before), not one teacher said more than "he reminds me of the absent-minded professor". When he started middle school it all fell apart when he had 7 classes, 7 teachers, different rooms, more homework, etc.
My advice to you is to forget the school system as far as diagnosis, that's is not their job. I took my son to a neuropsychologist for testing, counseling, and got a proper diagnosis with advice on what to do next. He indeed was diagnosed with Asperger's and then was eligible for special education programs at school with individual learning program set up.
FAst foreward to today, he is in 10th grade, a solid B student, involved with the band and a group of awesome friends, has high self confidence and loves shcool. BAck in 6th grade I never would have thought I would be able to give any other parent advice about this. So please be encouraged, make that appointment. BEst of luck to you and your daugher.


answers from Clarksville on

Correct me if I'm wrong, but school teachers and staff CAN NOT diagnose a student because of legal reasons. They are not medical professionals and the schools can be required by law to pay for individual/private testing if their teachers diagnose or make statements that a child has x.

As a former teacher, I don't agree with this because the teacher spends a bulk of her time with her class and knows how his/her students are in the setting. Isn't this the point of testing too? We had a similar experience with our son, now 10 y/o, when we first arrived at his current school. He was receiving OT services at a private school prior to our move and when we arrived at the new school the school OT dropped the ball on some of my requests. After writing a letter to the director of sped and requesting that he be tested in all areas they complied. He was tested and during the eligibility meeting the speech teacher commented that he tested normal in all areas but she agreed there is something and requested that I stay on top of it. Two years later we got an Asperger's Diagnosis and she later told me that she "thought" he might have AS but couldn't say it for legal reasons. She was glad I pursued things and kept advocating for him.

While 4 seems young to me to be pushing for a diagnosis, I think it's important to stay on top of things to get your daughter the services and early interventions she deserves. It's an uphill battle and one that you need to keep fighting. It's exhausting, frustrating and expensive but it's worth it for your child.

Pathways for Family Healing magazine has a autism issue that they printed. You can find it in their back issues. There is an excellent article on movement and brain development.

If you're not already doing the following, I would suggest you try some of these to see if you notice anything different with your daughter.

* Modify her diet. Feed her whole foods: Fruits, vegetables and whole grains. Choose organic if possible.

* Give her an Omega 3 supplement...DHA for brain development.

* Remove highly processed, artificial colors/flavors, aspartame, high fructose corn syrup, added sugars, and preservatives from her food.

* Check out the Feingold Diet.

* Work diligently with your daughter: roll play various scenarios, give her opportunites for lots of movement.

* Find a local support group. Check out OASIS, the Apserger's online support and information.

Good Luck,



answers from Sacramento on

I recommend the book "From Emotions to Advocacy" the author's last name is Wright. Also the website This book will give you so many tools to help you navigate w/ the school system. I have a 9 year old on the autism spectrum, and have had to fight the school district tooth and nail to get appropriate services. We have to bring a special ed attorney to all our IEPs, and have taken the school district to due process/fair hearing 3 times. Unfortunately, they will not follow the law unless they are forced to. The attorney has been the best money we have ever spent when it comes to our son and getting his needs met. Starting today, put ALL communication in writing (do not rely on in-person or telephone correspondence, because they can deny the conversation ever took place). Request the assessments you want them to do in writing, then they have to do it within a certain time frame (don't know about the time period in your state, but they can't just ignore you if you put it in writing). Any time a school district employee tells you something verbally, follow up in writing. This has been a HUGE tool for us. For instance when we started the battle when our son was 3, the special ed director would say that they wouldn't provide this or that because he didn't qualify for whatever reason (things I knew for a fact to be illegal). Then I would follow up with a letter, here is an example of what it would say:
"Dear Mrs. So-and-So, Based on our telephone conversation today, March 26, 2010 at 7:00pm, my understanding is that [name of your school district] will not provide my son [full name of child] with an assessment to determine [service or assessment you want them to do]. If I am mistaken in my understanding of your position in this matter, please let me know as soon as possible." You would be AMAZED at how many times I would get a letter or a phone call IMMEDIATELY, with the special ed director saying "oh, no, I never said that, of course we will do the assessments, blah blah blah" even though the day before she had said the opposite right to my face. It SUCKS that you have to go through all these hoops, but it is worth it for your child. My son is doing amazing. We have fought SO hard to get the appropriate services for him, but now seeing him doing so well, I am so glad that we did it. Also keep in mind, the teachers and the principals, in general, are on the same team as you are, with wanting to help your child. It's the district administration that you are fighting, and the teachers, speech therapists, and such, are not able to tell you what they really think, or they could lose their jobs. Try to focus your energy and anger off of the service providers that are working directly with your child, and keep the lines of communication open and friendly with them, no matter how frustrated you get with the services you need and are not getting. It's not their fault that the system is messed up, and good or bad, if they like you, they are going to do a better job w/ your kid. Make sure that if they are doing a good job, you let them know that you appreciate them, and that your fight w/ the school district is not a reflection on them personally. I have about a hundred other things I would like to say, I am very passionate about this issue, but I will just say my 3 recommendations are 1) get the book by the Wrights; 2) consult a special education attorney; 3) put EVERYTHING in writing.
Best wishes to you and your son,



answers from Chicago on

Let me say I'm sorry you're going through this. I do not have special needs children, do not know a lot about Aspergers nor about IDEA laws.

What I can say as a mother of three though is that I don't think I would wait for anyone to test my child. You make no mention of taking her to your own doctor or seeing your own specialist?

I do see that your daughter is only 4 and that you are talking about the school therapists and special education department ignoring you. Why are you depending upon them if you have seen the signs/symptoms of a special need? You also said that you have seen these signs for two years before discussing it with them.

I understand that you are frustrated that you don't think the school system is doing enough. I would definitely keep in touch with the superintendent about ensuring your daughter gets the proper testing that the school provides.

I would also however pursue this issue on your own. I think you DEFINITELY shouldn't wait any longer. I understand that there's limited space to write in these postings, but I am confused about why you didn't take her to your own doctor or get a referral to someone who could test her before now. Clearly you understand that she has special needs, so why wait for the school to get their act together?

I hope my input didn't come across as too critical or judgemental. I understand that I am not in your shoes, nor could I understand everything you've been through in this brief posting. I hope you get the help for your daughter that she needs.


answers from Atlanta on

I have two high-functioning children on the autism spectrum, and they are currently age 3 and 5. I fought two different school systems in Atlanta for services and appropriate support, and was denied or put off over and over again. I was "that mom" and probably got more attention and services than other, less vocal moms, but it was still not nearly enough for my kids. Incidentally, my boys already had the diagnoses needed for services- I take both of them annually to Dr. J. Gale off Powers Ferry Rd in Marietta for a Psychological Eval- she is WONDERFUL, affordable and more than competent to make necessary diagnoses. Additionally, her paperwork is exactly what is needed for the Katie Beckett Deeming Waiver, which is non-income based assistance with paying for developmental services for kids like ours.

ANYWAY, I finally moved out of the city. My boys are now in the Special Needs Preschool classroom at Ford Elementary in Cobb County, and the differences in services available and quality of teaching is ENORMOUS. We are all tremendously pleased. I realize that moving isn't possible for everyone (and we were home shopping anyway- the troubles with the schools intown just made our decision to move to the suburbs that much easier.) Just wanted to say that there is hope out there- not all school systems are difficult to work with. Good luck!



answers from Chicago on

First of all there are a lot of moms out there who do care and are offering every inch of their care that can even if they hurriedly read your post and perhaps couldn't respond the way you wish. I am understanding that you are fed up but people who wrote did so because they care. Secondly, since you know how this system seems to go I would do all of the above, contacting everyone you can and keep copies of your letters for yourself. And you are right to do it now. I am the mother of a young man who was never diagnosed but called inattentive, rude, lazy and so on and so on. He has, after a hospitalization and a year of therapy was classified as bipolar. I was not on the ball as much as you were, I believe teachers, etc. and therefore did not do as much earlier in his life. He suffers very much and subsequently I do too, in all likelihood that could be a factor in my own recent bout with cancer. I acknowledge that you are frustrated, but give credit to those caring people who while perhaps misread your note, wished to help you. Good luck.



answers from Omaha on

The medical diagnosis for Asbergers must be made my your own physician or specialist. This is not a requirement of the school system having been down the road in the past. Medical diagnosis must be made by your personal physician as the school district does not have the capabilities or authority to make this type of determinations. Once the positive diagnosis has been made then the school district should be able to provide the required schooling your child needs. Make sure that you get more than one physicians opinion regarding your child's diagnosis. If the school district doesn't provide the required school then I would take further measures. Good luck.. having dealt with the local school districts for my sons disability you have to have a firm spine and determination. Don't back down regarding your child's education.



answers from Eau Claire on

Hi Jenny. I have done some research on autism spectrum disorders because my sister has seen some symptoms in her three year old son. My advice to you is to not swallow everything you read or hear. Take an honest look at the claims that these disorders can be environmentally caused and helped through dietary changes. If the doctors don't know the cause or the cure, how can they tell you it's not vaccines or something else, and how can you trust them to tell you the best treatment? Take this into your own hands and homeschool your daughter while reading everything you can find on the subject. Don't worry about socialization. Her family and whoever you decide is good company is enough, just like it was for the generations before public schools. Follow your instincts. God gave them to you to protect and guide your children. Pray for wisdom and you will receive it. I pray that God will bless you and your family and help you find the best way to help your daughter.



answers from Columbus on

You don't need an attorney, find a special education advocate in your area to attend your IEP meeting with the school. Then, bleed them dry for all the services needs to help your child benefit from their education. This is the LAW. The administration of your school DOES NOT get to determine what this will consist of for your child the child's doctors do. FYI - I am very familiar with special ed law from the perpsective of a school administrator. They will try to give the bare minimum in services if you don't come in educated and aware of your rights.

FYI - all testing and services are covered/paid by the school district.



answers from Dallas on

We got our son tested through the school and outside the school. If you are covered for a pediatric neurologist, then you can get her tested.There are ways to get the insurance to pay without calling it asperger's testing.



answers from Minneapolis on

I know this can be frustrating, however I was wondering if there is any agencies in your state that help parents with children with disabilities- in mn there is PACER & ARC- check on the internet as I work with Pacer in Mn for my son & his diasabilities & they are great. They focus on advocating for parents & can provide you with resources(and or) direct you to resoures that would better assist you and your child. best wishes to you.



answers from Milwaukee on

I am not sure of what the laws are in SD, but I am sure that you can look them up online. Once a request has been made from a parent for testing, the school district is under obligation to fulfill that request in X amount of days. (Again, not sure how many days for SD.) In order to assure that the child is given all services deemed necessary, and the parent understands all of the technical issues of what h/he can accept or refuse, there should be an advocate assigned to the case.
With that being said, I would avoid an attorney - just because of the fees. But I would go into the next meeting asking for an advocate - once you are educated regarding the system, I guarantee the educators are not going to brush you off!
Good luck to you and your child!



answers from Duluth on

well, you could do whatever it takes to help you out and make you feel more comfortable. ive never been in your place, but i think you should pursue it further to make sure your child gets the help she needs. as a person who relates with a lot of aspergers type symptoms, you could homeschool; the ridicule and torture i went through socially in high school was almost unbearable. i CANNOT and will not ever socially relate the same way as other people. as an adult people dont seem to care, i have definatly gotten more friends as an adult but the cutthroat world of high school is definatly not friendly to anyone who is different. my sister had to deal with a lot of questions "what is with your sister?" and that because it was obvious i was not "normal" (but who wants to be!)

so if you are able to and wish to homeschool, that would be a loving route, though putting your kid in school isnt hateful but it will give her the chance to find her place socially. i did have friends, one that is life-long sittin-on-the-front-porch-watchin-our-grandchildren friendships, so its not ALL bad, but you do what would work best for your family. i was never diagnosed, tested or put through any assistance or anything, so i dont know how that works with school schedules..
but do what you feel the most comfortable with. schools typically receive money per kid in seat, so if your kid isnt in their seat, obviously they dont get that particular sum of money, so its like saying "you werent good enough for us"



answers from Minneapolis on

I have several friends with children with similar needs, so am familiar with their frustrations. Your location may make this more difficult, but searching for and finding a qualified person to make a definite diagnosis is something that can help you get your child the assistant that is available. (I have an excellent recommendation that I can share for a Dr. but they are in the Minneapolis, MN area). Yes, it is expensive and rarely covered by insurance. Long-term payment plans may be available.

The school may always be the secondary source of assistance, you being the first. I am currently reading Temple Grandin's latest book - "The Way I See It" - is which she talks about how her mother took charge of her eduation and provided extra instruction along WITH the school to give her what she needed to progress. I'm finding it to be a very informative book. The author recommends taking advantage of all the specialtists available through the school, watching what they do, and then repeating that instruction at home, because autistic/Asperger children need SO many hours of repetitive instruction per week.

For inspiration, I recommend watching Dr. Grandin (yes, an autistic woman with a PhD) speak on -



answers from Des Moines on

(((hugs))) I understand how incredibly frustrating this situation is for you.

My opinion might differ a bit from the others. I would hesitate to be labeled "that mom" from the start. I have worked in special ed and there is definitely a difference between an involved/active/concerned mom and "that mom." It's a fine line...but one worth understanding. The saying "You can attract more flies with honey" definitely works.

Currently, my daughter and another girl at our school both need interventions for learning issues. The other mom has a very demanding approach. She "demands" that her daugther needs this and this and that they better follow through. This mom is very frustrated with the school and lets everyone know. As a result, the teachers dread hearing from her, and "unfortunately" aren't as interested in helping her daughter. There is definitely a lot of negative talk about this mom and it will follow her daughter to the next grade.

As for my daughter, I try to work with the teachers in a very non-confrontational way. I ask for their opinions...even though I know much more about my daughter than they do. By asking teachers, etc. to help you, you involve them in the process and make them feel respected. Also, it creates an atmosphere of working together.

Yes, you need to continue to be your child's advocate. You need to continue to search for appropriate testing and read as much as you can. You will want to network with other moms....they will probably be your best source on what works and what doesn't. Other moms can also give you insights into the school system and help you with the quickest route to get soemthing done.

But, be careful of being labeled "that mom" who involves the legal system and higher state authorities. Your child is only 4 years old and you still have a long time of working with this school district and teachers. You need to walk that fine line of being your child's best advocate without alienating those who can best help you (and your daughter) in the future.

(I'm not saying it is NEVER appropriate to involve legal system, etc. but that after reading your original post, I think it would be premature to go that route right now.)

best of luck


answers from Minneapolis on

My older son is a freshman in high school and was diagnosed with Asperger Syndrome when he was in grade 5. The school was the one who suggested testing him, and they were the ones who diagnosed him. I have moved a few times in the past few years, and my son's IEP gets reviewed twice a year, plus he gets re-tested every 3 years. There has been a difference in the day-to-day help that my son has received from the various schools over the years. Right now I am fortunate because the first class of the day is only for kids with Asperger Syndrome and he has a "para' in each of his classes.
Personally, I wouldn't consult a lawyer. Outside of the school district, my son has also worked with a psychologist who specializes in kids with Aspergers Syndrome. I would suggest finding someone like that, they can test your child, and they would be able to help you with the school. Good luck!



answers from Minneapolis on

I have not read all the other posts, so I apologize if I repeat anything that has been said. I was a special education teacher in MN for four years before becoming a SAHM. The first thing I want to tell you is - way to go!!! You are well on your way to a path of strong parent advocacy that is the best thing for your daughter. Don't ever worry about being "that" parent, because it is most certainly "that" parent that makes sure their child receives everything their child can receive to the letter of the law. Secondly, do some research into parent advocacy groups in your state - in MN, we have a group called PACER. They are a WONDERFUL resource for parents asking all the questions you are asking. Third, do not hesitate to contact a higher authority from the state for answers to your questions, and by all means, tell the superintendent and the special education director that your information comes from "so and so" at the state. That will get their attention. Use legal terms as much as you can, so they know you are on top of things and they can't get away with anything.

Special ed testing is expensive. There are MANY new cases of ASD cropping up, and districts are getting nervous that students are being overqualified in ASD. That is causing them to reduce the number of ASD assessments they give. Not sure if this is your district's situation, but it was in mine. So, inform yourself, arm yourself with special education laws and lingo, and start making things happen!! Trust me, as soon as they know you mean business, they'll get down to business.

Best of luck to you and your daughter,
Amy K



answers from Minneapolis on

I'd do the homeschooling and private/outside specialists in a heartbeat. I homeschool, and through my co-op know many parents who have been through what you are experiencing. They have turned to homeschooling and private assistance and *all* have said their child(ren) are better for it. They seem to have more control over their situation. The benefits of homeschooling is you can tailor curriculum specifically to her needs and pace, you will find other families like yours to cultivate friendships, support and resources, and you will hopefully get one on one assistance through an independent specialist without dealing with any red tape that a school specialist might have to go through to get your child services.



answers from Appleton on

As a teacher who has seen a lot of children slip through the cracks, I highly recommend that you get a referral from your pediatrican and have your daughter seen by a developmental pedatrician. My son is going to see one this summer and has similar issues to your daughter. I find that the schools rarely diagnose anything on the autistic spectrum and your best bet is to get a medical diagnosis that the school district will have no choice but to address. When you leave it in the hands of schools, unfortunately, they can drag their heels especially since she is so young.



answers from Chicago on

First off, see if you can attend a workshop on how to effectively advocate for your spec needs kid in the public school system. (At this point I am sure you are getting all huffy-puffy at me, thinking I haven't read your post correctly because obviously you know how to navigate the system. Just relax and hear me out. I used to think the same thing too...until I actually attended the workshop.) In Chicago, it is the Perhaps if you do an Internet search, or call the Family Resource Center and ask if they know where you can go in your area, you might find a similar agency.

Secondly, if you do not want to be labeled as "that mom", you either need to play by the system's rules or learn to care less what people think about you. (I try to do both.) Yes, it is "not fair", but if life was fair, we would have a more ability-diverse society and we wouldn't be having this exchange in the first place. I suggest that you never assume, especially within an overburdened and underfunded bureaucracy like the public school system, that people are going to speak with each other in a timely fashion. I don't know whether you put your requests in writing each and every time, or if you cc:'ed all the administrative higher ups on them. I certainly would not expect anyone to offer up information about my kid unless I ask.

Next, it is my understanding that I cannot tell the public school's cadre of experts what specific label my child should get. (Personally? I did not care if they labeled her "on the spectrum" or "high-functioning" or any of the other names in the bogus hierarchy of children with autism spectrum disorder. The only issue I would have argued is her cognitive ability, which is average, because an incorrect assessment would mean an inappropriate placement.) If the tests that your school is using are not appropriate, you can request in writing which ones you want the school to use. There's also steps you can take to get your daughter re-evaluated, legally, and at the school's expense. You had better have some non-anecdotal proof to back that up, though.

Lastly, are you positive that your daughter has Asperger's? You say that she has a speech delay, yet one of the main symptoms that differentiates Asperger's from classical autism is language. The intonations and social nuances aren't there, but the language piece is definitely not missing. If your kiddo ends up having "mild" or "high functioning" autism, it's not the end of the world. My five year old and I are getting through it pretty okay:^)

Good luck.



answers from Fargo on

First off, good for you for noticing the signs early. That will help your daughter out tremendously. I personally don't know too much about Asperger's, but I do have a close friend who's 7 yr old daughter was diagnosed with it quite a few years ago. We, also, live in a rural farm area and our school system just doesn't have the resources (teachers/staff, funding, etc) that a larger city/school system would have. My friend does have her daughter going to therapy in one of the bigger towns once a week and she also does "therapy" at home with specific developmental toys that were recommended. I know she had to stay consistent with talking to the school to make sure she was getting the help she needed (especially in the beginning) but things seem to be working fairly smoothly now. You are your child's best advocate. They also may be more apt to work with your daughter once she's in school, too.
Hope this helps!



answers from Omaha on

As a school psychologist I have to tell you that I think you need to talk to your doctor first. An Asperger's evaluation includes just about everything that they have already done, however they can only make an "educational diagnosis" which is difficult, but not impossible, to do without a medical diagnosis. In order to have a medical diagnosis your daughter would be need to be evaluated by a medical professional. I understand the insurance issue and since most of the testing has been done, you should be able to take copies of the school's reports into your doctor. I know that in my state schools can only do testing for medical diagnosis if we have a note on the doctor's letterhead requesting the specific tests they would like us to do, the reasons for them and be willing to meet with us and the parents to discuss the results.

I can understand your frustration and I agree that the school should have been more upfront with you regarding your concerns and should have discussed with you fully what they are evaluating and why and how those link into a diagnosis of Asperger's and even a discussion regarding an educational diagnosis vs. a medical diagnosis. If you truly feel that your rights have been violated and you are getting nowhere with your district then you can contact your State Dept of Education and request that you begin "due process."

Best of luck to you!



answers from Kansas City on

Teachers are not allowed to diagnose students, whether they are special ed teachers or not. It doesn't matter where you live, they simply cannot do it, nor would I want them too. It takes a specialist who knows how to administer and interpret these tests. You may need to go outside of your area to find the right person.

As a person who is working in the field of special ed, I would not advise bringing in attorneys at this stage. Life will be much easier if you work with people, and having a confrontational attitude will not help you or your daughter. There are many people involved in the IEP team, and coordinating schedules and finding time to discuss your case can't happen in an instantanious manner. Most of these people have pretty heavy caseloads and are doing the best they can.



answers from Des Moines on

i have a friend who's oldest has Asperger's. before he started school a few years ago, they really looked around at schools to make sure the school could handle the needs of a child with Asperger's. For your child's sake, i would start looking for another school if you can, but don't switch her until you find the right one, since children with Asperger's don't do well with changes. Considering this school hasn't wanted to test for it, I don't think they would be good at meeting your child's needs for education.



answers from Albany on

Wow and Hi J.! What an incredibly frustrating and stressful's like the hurry up and wait scenario so often found in our country's "systems" of many types. Your story mirrors my sister's situation with her son but she is a year past where you are and was able to finally navigate the system to get services in place. Although they are a very intact and active family on many fronts, their whole lives seem to revolve around the needs of my nephew with Asperger's in one way or another. He is a wonderful child but you are right in that the earlier interventions can be put in place throughout your daughters activities and life, the higher the probability that she will learn and adapt with her abilities and be more fully integrated with her takes a lot of patience and consistency from every party involved but love and faith will pull you through it......and just like now, tapping into any possible viable support system can often yield surprising results. I know I'm not giving you anything concrete to work with here but I'm not and haven't been where you are. I have sympathy and hope but not empathy and concrete directives that could actually give you a working plan or possible alternatives. My sister is the person who can provide that, just like any other Mom with a special needs child. You're right that each state is different but there are more and more similarities and parallels as this diagnosis becomes better understood and federal regulations are beginning to be put into place. I'm going to send your letter to Melanie, she is in Kennesaw, GA and knows the system there but may have quite a few insights and suggestions for you. I know there were many months she felt like pulling her hair out and many times she and her husband thought they were banging their heads against brick's just so unfair that you have to work so hard just to provide the help for a deserving child who will one day be a contributing adult to our society. Even if it turns out the Asperger's is not the diagnosis, you as her Mom know that there is something different and that she has special needs that only a professional can determine and that in all likelihood, an IEP or special program needs to be developed and put into place. My heart goes out to you, I know it's not easy but you sound like you are committed to figuring it out and making it work one way or another and she is lucky to have you as a Mother. Well, sorry so wordy but just wanted to let you know I care. I'm not sure if my sister is on Mamapedia any more but I will send her your info and ask her to share her email so you all can connect directly if you think that would be useful to you. Take care and don't ever lose will find strength and guidance you never knew you had to carry you through the years to bring her a happy life. God doesnt' give us challenges without the tools we need to meet them; we just have to remember to reach out, take them, and use them:) M.



answers from Minneapolis on

The problem with the school testing is, well, it may not be accurate. As a mom to 2 kids with special needs, I know that if I would have relied on the results of my original schools tests my kids would have been classified as "fine." We have moved to a new school district, which is wonderful, but still has issues (all schools do). At the new school, I requested that my 2nd youngest be tested to see where he falls on the Autism spectrum and they totally goofed the test. Now I am in the process of getting a referral to have it done outside the school by an independent agency - then the fight will be to get the school to accept the diagnosis when they have determined there isn't one *sigh*

Anyhoo - the moral of the story is: you cannot always count on the school to do the right thing. Even if they do the "motions," doesn't mean that the results are going to be accurate. I would contact your county's health and human services department and ask if you can have an evaluation by the public health nurse and a mental health case worker. Once you are in "the system" so to speak, that may push things along. If she is dx'd with autism, then the county can help you cover any other necessary testing she needs, provide info about therapies available in your area (even in your home), and even go to school meetings with you and act as an advocate for you and your daughter.

Good luck.



answers from Minneapolis on

Have you asked your pediatrician to refer you to someone who can diagnose your daughter? My two grandchildren were sent by their pediatrician to the Alexander Center in Eden Prairie Mn. where they were given extensive testing and evaluation and were medically diagnosed as being on the autism spectrum. Once we had this info the path was cleared to get all kinds of help.



answers from Minneapolis on

I don't have any experience with special education issues, but as an attorney and a mom of school-aged children, I would be hesitant to get an attorney involved at this stage. Although it seems like a long delay and forever to you, it is still fairly early in the process. Unfortunately, once attorneys get involved it can get contentious (and expensive) pretty quickly. If you live in a rural area and don't have a lot of options, I wouldn't want to risk a legal battle at this point. Good luck and best wishes to your daughter.



answers from Houston on

Hi J.-

I'm no expert and although I know some requirements are national I also know that there seems to be some differences from state to state and even city to city in what's available to kids. That being said, I think you might be going into this expecting too much from the school. I know they are required to provide services but at least from what I've seen, those services are speech and OT and then a 504 or IEP once your child starts school. My son was diagnosed with Asperger's by a developmental pediatrician at the age of 4. We had the school evaluate him twice before he entered kindergarten both times being told "there's no academic need" for services. He is 8 years old, in 2nd grade and has NEVER received a single service from the school other than a 504 plan which we meet with the teacher and principal about every year. When they first told us that they wouldn't provide anything because he didn't seem to need it, we were mad, we talked about threatening them with a lawyer and we were going to escalate things as high as we could. In the end, my husband and I settled down and said, well let's see what happens and give them the benefit of the doubt and assume that they might actually have a better guage of where our son should be compared to other kids then we do. As it turned out, they were right. He is a straight A student, enjoys school and although still struggling with making friends, he is accepted in the school environment.

I know this is not typical of all Asperger's kids, but we feel good out our choice to cool off and let things play out. Now we have an excellent relationship with the administration and teachers at our son's school and whenever we do need a special "favor" in regards to Tyler we get it and usually the teachers are so in tune with his needs from our conversations that they are on top of it before we even know about it.

*I should add that although we did not push for the school to provide services we did have our son in private speech and OT therapies so it wasn't that we sat back and did not get him any help, we just chose to continue with the private therapy rather than fighting with the school.

Good luck,


answers from Des Moines on

My son was diagnosed with Aspergers at age 8. Prior to that, he was diagnosed with ADHD, which I knew wasn't right. Funny thing, the SCHOOL TEACHER diagnosed him- and he was labeled with that from that point on. The school is not your best option in getting your child properly evaluated. The school will try to save money as much as possible, which is why they are putting you off. I paid for the assessment on my son and I feel he received the best possible evaluation. Even with the diagnosis, he was still not eligible for an IEP at the school. He is extremely high functioning, and I was told his behaviors are not affecting him academically.

However, in support of our local school system (principal, teachers, and others in his school directly), they worked with him continuously and helped him along the way, gave him direction, tools, started a social skills group to help him, gave him sensory assists, etc...and now my son is 12 and I didn't mention his Aspergers to his middle school teachers until after the 1st semester. Most of them were very surprised to hear it, said they would never have realized it. Some responded by saying now that they knew, they could look back and see some subtle traits, but didn't put 2 and 2 together, and it wasn't anything they were concerned with anyway.

So, I had some wonderful advocates in the local school, even though the school "system" would not help me. I did not back down, and I'm so proud of my son, and so many of the staff in our local schools! You are doing the right thing by keeping on the schools, but I would recommend getting your child evaluated independently and then once you have an official diagnosis, then badger the school for as much assistance as you can get!

Good luck!



answers from Dallas on

i have a child on the autism spectrum, and while you are right to be concerned, i think you are jumping the gun on an asperger's diagnosis. the first step is usually a PDD-NOS diagnosis until around age 3, then an ASD diagnosis, then they can narrow it down to asperger's somewhere around the age of 6/7. you can be "high functioning autism" and NOT have asperger's. asperger's is often characterized by a lack of impulse control sometimes coupled with agression. i think you are absolutely right to be concerned and i would demand that she be tested using the ASOD. good luck!



answers from Minneapolis on

Contact St. David's Center for Child Development. Jan Foss is the Director of the Pre-school there and she would be able to guide you directly to the people/ services you would need to assess your child. My children both go there and we love it and have been extremely impressed by the "above and beyond" treatment/therapy options and services for children in need. 3395 Plymouth Road Minnetonka, MN 55305 ###-###-#### I know you are out of town but perhaps they can assist you in finding a center close to you that is more willing to help. or perhaps they can urge you to ask the right questions or challenge the system in the most effective way. You are the mother and you know!!!! your child is being overlooked- fight for her.



answers from Phoenix on

I am just entering the world of special education because my son just turned 3 and has speech, social and motor skill delays. The advice I have been given is to be the squeeky wheel and demand that services be provided. Follow up, follow up, follow up and push push push them. Call everyday or stop in every day so that you are so annoying that they do the testing to get you off their back.

I know it's not right and it's not fair. I know that you are now concerned that they are incompetent to help your daughter anyway. But being that you are in a rural area and your insurance doesn't pay for services, you will have to educate yourself and push them to do the necessary things.

Wish you the best in getting the help your daughter needs.

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