Working with Schools to Develop an IEP


We are already making preparations for the upcoming school year. Can you give me information on working with the school IEP for my Aspergers son?


When you have a child with Aspergers (high-functioning autism), IEP negotiations are extremely important. As the parent, you hold a vital position on the IEP team and unfortunately, many moms and dads often feel undermined and in some cases, bullied into accepting the opinions and terms decided by the educational staff. Your input is not only important, but also necessary in the development of a well-rounded IEP for your youngster.

In the days and weeks before your IEP meeting, there are several things you can do to make the experience more pleasant and the outcome more positive. This IEP is imperative to your son’s future.

Here is a list of suggestions for IEP preparation:
  1. Know your son’s strengths and weaknesses so there are no big surprises during the IEP meeting. If you know your son’s abilities and weaknesses, you will be better prepared to request additional services when needed and not offered.
  2. Make notes, ask questions, and request clarification before and during the IEP meeting. When goals are set, be sure you understand the wording and that your thoughts are taken into consideration.
  3. Represent yourself as an equal member of the IEP team. Dress respectably, speak intelligently, and do not feel inferior. Yes, the other members are education professionals, but you are an expert in your son.
  4. Request access to all updated evaluation reports before the IEP meeting in order to prepare for the meeting. You should not have to settle on glancing over the reports or hearing the results second-hand during the meeting.
  5. Request time to review the IEP before signing. There is no reason to rush through this process. Take the IEP home, read over it, and make changes if necessary. Do not sign until you are sure your son has the best IEP possible.
  6. Schedule private evaluations, if you desire. Medical evaluations, including medically referred psychological testing, will present a complete diagnostic picture. Educational evaluations are primarily geared towards diagnostics that affect only the specifics of the education process. These two diagnoses can be different. Without a medical evaluation and official medical diagnosis, your son may miss vital services.

When you have a youngster with Aspergers, the IEP should be treated as the important document and process that it is. The IEP is the backbone to his educational assistance. If you have any questions about appropriate goals or specific questions about the IEP process, there are many great resources available online.

The Aspergers Comprehensive Handbook


Anonymous said...

I have always known there was something different with my child. From birth I knew him to be different.
He is very, very smart and articulate and funny. We have been in the psychiatric loop since he was 2 and have gone through a roller coaster of medications and diagnoses. He was diagnosed with Asperger's at 8 and since then I have read everything I can find on the subject. I fought with his school for a year and a half for an IEP plan and we are very happy that one is now in place.

The problem I face is that there are no agencies where I live that deal with Asperger's. And from what I can understand from DDS the medicaid and SSI that he has been on for severe ADHD does not cover any treatment for autistic spectrum disorders. Tell me how that makes sense? There is nothing in my area for my son. He can't go to daycare durring the summer because they are not equipt to handle him, he cannot participate in any extra curricular activities because of his melt downs, and even worse, I cannot find any resources for social skills training, or manners training, or parenting classes for me. And what really pisses me off is that all this stuff is recomended to me and then I can't find or when I do find it it's 300 miles away. The therapy that he goes to every week seems to serve no purpose. I cannot find theraputic babysitters equipt to handle my son because he is not "developmentally disabled."

I am having a very hard time accessing resources for my son.
It seems that everything is a fight.

Sorry to vent, but it is very frustrating and if you have any information that may help, I'm all ears. Maybe you have more connections in this field than I do. I live in Russellville, AR.

Thank you,


Anonymous said...

I am having a meeting to revise my son's IEP for next year. He is going in to 4th and will be changing school as the school district is closing schools and making lots of changes. I plan on requesting a teacher he already knows and discussing a plan for when there is a sub (he cannot stand that the sub does things different than the teacher and they do not "follow the rules"). He has a hard time staying focused and has become very disorganized. He has a hard time finishing things and does everything at a snails pace. He often doesn't get things turned in without being reminded. I write him notes to help him remember when I can. They do have some visual aids to help him, but I think he gets used to them over time. What should I ask for?

Anonymous said...

Here are some additional ideas:

1. placement in a classroom with an in class support teacher.

2. to address attentional issues
small classroom setting
fewer problems
worked assigned in small segments and provide feedback
on next steps after that.
Do not provide more than one instruction at a time.

3. To address disorganization
Reduce the number of motor skill tasks he needs to do.
provide an extra set of books
provide online notes and assignment so there is always one
place to get information.

4. Issues with planning large projects
Student should be given work in small segments
Student and teacher review at each step progress.

Sam's Mom said...

@Robin I wish I had some advice that would matter, but I do not. However, I do feel exactly as you do and you are not alone. We have similar experiences and frustrations. I did find a baseball league called The Miracle League sponsored by Easter Seals and they may have a branch near you.

Anonymous said...

This is great info. Thank you! I am very concerned that we will not even get to the IEP stage. They are suggesting I get a medical diagnosis and appeal with my insurance company. They also said that my son may qualify for an IEP as kids pass him by and his lack of social abilities as well as gross/fine motor skills fall even further behind. I feel like I am out of options- they want him to fall further behind before he can move forward? Sounds so backwards.

Anonymous said...

My 13 year old daughter was diagnosed with Aspergers this summer. She, too, was diagnosed between 2nd and 3rd grade with non verbal learning disorder. She learned to cope and did very well in school. She has been in a private school for most of her life, except for 1 year when I homeschooled. Public schools here are not good.

However, her grades plummeted when she was half-way through 7th grade. Now she is in 8th grade and her school does not have resources to support an aspergers child. Is there anyone out there from Birmingham area that can tell me where to go to get a social worker or advocate so we can help my daughter?

Anonymous said...

Hi all,

The school district where we live does not currently have any official plan for students with autism. A group of parents is going to be presenting some models to the school board for good autism plans from other school districts around the country to give them a starting point from which to try to develop an effective program to deal with the huge increase in the numbers of kids on the spectrum in our town (all across the spectrum - not just high functioning). I am wondering if anyone here knows of good programs or autism plans that school districts use? I have heard of the NEST program in NY, but I imagine there are many others as well. Any suggestions would be really helpful!

Anonymous said...

I have had problems from day one this school year with the case manager. I have an email stating that he had my son's charts on his home computer and could not access them until he got home! Of course when I alerted the Sped director, she "checked with him" and it was a misunderstanding, they were not actually stored on his home computer and they would make sure all the charts were sent from the school to avoid further confusion. This man has kids of his own in my son's school, and I am not comfortable with him accessing any of my son's personal information from his home.

There was also an incident, which I brought up at our recent meeting, where my son was actually bullied by a substitute teacher. This teacher grabbed a pencil out of my son's hand, snapped it in half, and threw it against the board...all with absolutely no warning asking him to put his pencil down. I know my son can exaggerate and his perceptions are a little off at times, but I just figured I would let them know about it at the meeting since it was coming up soon and I didn't want anything taken out on my son, not to mention I did not want to give them time to think of an excuse. Then my son found out this same sub would be subbing for a teacher he has 3 times in one day, and he refused to attend school that day. I chose the lesser of 2 evils and kept him home, since his anxiety is very bad when he is home alone while we are at work. He called me and I stayed on the phone with him for 20 minutes so he would go into his room and get dressed, make his bed, and get some things done. When I brought this up at our recent meeting they were all very surprised, saying this teacher would never do that, blah blah blah. I said something must have happened for him to refuse to go to school, he was visibly upset. So they called the sub in, who initially did not want to enter the room but instead sent a "message" that he had heard about an incident with a pencil but it was not him, it "may have been a sub prior to him", though he could not think of their name. We insisted he appear, and he said he would never do anything like that, maybe my son confused him with this other "mysterious" sub. So we called my son in, who confirmed it was indeed this sub. When questioned by the Sped director, my son said he "threw the pencil". I asked him if he grabbed it out of his hand and broke the pencil in half like he had originally stated and he said yes. I think he was a little intimidated to actually say that in front of the entire team and this sub who he is scared of. Then the subs story changed, he said that he "may have taken the pencil out of his hand and placed it on the desk next to him". Hmmm.....something did not add up there. They "cleared the air" according to the team so that he would not be scared in the future and they talked about safe places, safe people, etc. It is very obvious this was a cover up, I believe my son 100% in this case. I consider this bullying on the part of the sub, but it is very difficult to accuse with no proof, and my son's perceptions have been known to be a little off. If nothing else, he now knows not to mess with my son.

I think this year is not going to be a good one at all. I do have an advocate, and she has been reinforcing our thoughts at the meetings, but she is going to have to step up here. I cannot do this on my own. Thank you for all of your advice!

Anonymous said...

My name is Heather and I am a stay-at-home mom of two wonderful children. In January, Nicole will be 15 and Matthew will be 8. I have been married to my husband Newton for 18 years.

Matthew is neuro-typical...well mostly. He has ADHD and has some sensory issues but for the most part he is fine. Nicole has always been a challenging child. From infancy, I knew that something was different. She was always hypersensitive and 'abundant'. In first grade she was diagnosed with ADHD. She was placed on medication. The first day, she came home very excited. She said "Mommy! I didn't go on Step today!" Step is like a time out. She was very proud of herself. I was sold and we continued the medication. She was also tested by the school district in first grade and was found to be 'highly gifted'. She tested in the 99%tile and was placed into a self contained, center-based program for highly gifted children. The nice thing was that most of those kids were just like her and the teachers understood her. For once she 'fit in'. Unfortunately, that feeling didn't last long. In fifth grade she couldn't take the stress of school, especially a gifted program. We had to move her back to a regular classroom. That helped some but it also created more problems. The other kids just don't understand her and she didn't fit in again. It was hard. Junior High was good for her. In some ways it helped her and some ways not so much. High School has been good so far.

She has seen several different psychiatrist. Along the way they have diagnosed her has ADHD, OCD, Bipolar, Tourette's, Sensory processing disorder, depression and anxiety. While she does have the symptoms of these conditions, none of them really explained everything. I have brought up the possibility of HFA multiple times but none of them would even consider it. I had heard about the Melmed Center so one day I just decided to stop in and make an appointment. So we are now on our 3rd psychiatrist (well actually she is a nurse practitioner) and finally have a diagnosis that fits.

On our first visit the nurse practitioner asked me if I thought it was possible that she was ASD. I said YES!!!!! I wanted to scream! We spent 2 hours there. An hour into the appointment, the real Nicole showed up in all her glory. She decided that she didn't want to be there anymore so she completely shut down. She would not make any eye contact (even less than usual), would not speak, would not even acknowledge the provider. It was good that someone finally saw it. Nicole could usually hang on for an average Dr visit but this was just too long. I'm sad to say that I was ecstatic when she started to meltdown. I feel guilty but it seems like no one ever believed me so it was good to finally have proof.

So they have diagnosed her as Aspergers, ADHD, sensory processing disorder and OCD secondary to ASD. They are taking her off the lithium (THANK YOU, JESUS!!!). She is on 3 other medication to treat the side effects of the lithium. So, we are hoping to get her off those meds to. That will bring us down to Abilify and Vyvanse. The Vyvanse isn't working (she failed their ADHD test miserably) so that will be the next to go. They are going to put her on Intuniv.

We had her tested for food allergies about 3-4 years ago. I didn't was to do the gluten free/casein free diet without some proof. She tested positive for wheat, egg, peanut, rye, buckwheat, pecan and cherries. Once we removed that, her symptoms have been better. She has made a lot of progress in the past year. I hope it continues.

Our current goal is to get her on an IEP. She is only on a 504 and is in the 'falls far below' category in math. I'm worried about her graduating.

Anonymous said...

My 7 year old son was dx with aspergers last month. I have suspected that he was an aspie for quite awhile. After I got his dx I requested an IEP from the christian school he attends.I had a neuropsychological testing done in November. I was informed that the public school system won't even start testing him for an IEP until 2013. Is this legal? I am getting the therapies he needs privately. I thought the school only had a certain amount of time to get my son tested.

Anonymous said...

This is absolutely not legal! According to the Federal Special Education law IDEA Section 1414 (C) Procedures, the school district has only 60 calendar days to complete the evaluation and determine if the child is a child with a disability. I believe that if the child is found eligible for special education, they then have another 30 days to get the IEP in place. Some states do have different timelines (it is 90 days where I live), so you should call your state's Parent Training Information Center to confirm the deadlines. Every state has a PTI to give free information about special education; you can find the one for your state on Wrightslaw here: http://www.yellowpagesforkids.com/help/ptis.htm. Once you are certain about the deadline, type a formal letter "requesting an evaluation and determination of eligibility within the 60 day (or whatever it is in your state) time frame, as required under IDEA". Then hand deliver the letter to the special education office for your school district and make a note for yourself with the date, time, and name of person who accepted the letter. If you do not hear from them, follow up!

It does not matter that your son attends a private school. Under a section of IDEA called Child Find, the local public schools are obligated to locate and serve all children in their district with a disability. The Wrightslaw website and books are excellent for learning your child's legal rights. By the way, it is important to understand that it is not enough for the district to find that your son has a disability - they also have to determine that it is affecting his education.

Good luck, and keep posting your questions here - lots of parents have been through it all with their school districts and can point you in the right direction.

Anonymous said...

The trouble is that very often teachers are not very good listeners, specially the ones in the primary sector. I never forget one of my son's teacher saying:" I understand, but I don't understand..." what ever did it mean! Incredible...
4 hours ago • Like

Anonymous said...

Had a terrible time in primary I have had to fight for a statement I have had a continuous fight for 5 years prime school are a pain they need a complete overhale I have been up against a lot with primary I am now up against fighting to get adam into the right high school
3 hours ago • Like

Anonymous said...

U can't work with teachers they are on a total different plant

Anonymous said...

I always give my personal email to my daughter's teachers and stay in constant contact with them. Let them know how far to push, when to back off, etc. It's been very helpful and the teachers tell me that not many parent (in any situation) do that.
3 hours ago • Like • 1 person

Anonymous said...

I am a teacher AND a parent of an aspergers child-I agree with Cynthia and can understand the challenges on both sides!

Anonymous said...

I think what the teacher was saying is that they understand your frustration, but they're not familiar enough with Aspergers to know exactly how to help. Tell them exactly what you deal with at home, how they shut down, think in b/w, all the little frustrations. It will never be a perfect situation, but that's where we have to prepare our kids for that world. It's not easy, I know, I'm there with my daughter turning 16 next week, but she has to be able to face some situations on her own. So, everyone, hang in there!!

Anonymous said...

Hi my son is 12 and is also in 6th grade. He has been diagnosed w/ aspergers,adhd, aniexty,and depression. He has had a IEP since kindergarden. In order for him to get help we had to have the his councelers/doctors write a letter stating what his diagnoses was. Just keep fighting with the school don't give up. I used to get phone calls every week from my sons school. He has gotten many inschool suspentions and was suspended twice. Things have gotten a little better since he gets more help and is with a teacher who specializes with kids who have aspergers or autism. So don't give up it can get better.

Anonymous said...

I will never give up fighting for my son!! The school has everything. All the evaluations. Everything they have asked for I have given them. They just don't want to "deal" with him. And he is the sweetest child u could ever meet. Not a mean bone in his body, so its not like he poses any threat to anyone. I had to take him home Thursday because he said "I have a diabolical plan" they asked if that was a threat n my son completely surprised said no. His diabolical plan. To skip the prom and after the marriage years become a famous actor--maybe be the next johnny depp. That "terrified" the other kids n class. So it wasn't a punishment, yet I had to bring him home from school. Am I the only one confused at this?

Anonymous said...

My son is 11 and has recently been diagnoised with autism/aspergers using the social response survey the teacher and I had filled out. Over the past 6 years he has been diagnoised with Adhd inattentive type, OCD, tic disorder, Sensory processing disorder and having anxiety. He is ridgid and has transitioning problems. He is the sweetest boy. Never has anything bad to say about anyone. He likes everyone. HE likes to please. 3 years ago he took the ADOS test and according to the pschologist in her opinion and the test results he was not autistic. We have tried medications for ADHD and none have helped. When he was young he had poor eye contact and sensory issues to sound. We worked with him, and when he was older he attended social group and OT. These issues were corrected over time. His biggest issue is time management and poor organization skills. We have been fighting with the school to get him an IEP. They won't give one to him and only give him a 504. His state exam scores are in the top 5 percent of the state. He was recently tested by the school and his IQ score is average. His processing score is in the 27 percentile. Infact he scored low across the board in processing. However, the score is considered average. If it were below 25 percentile he would be considered below average. He is social and thinks he has lots of friends, but in reality he doesn't. There is 1 kid in his school that is a really nice kid that is friends with him. However, it's not like the phone is ringing off the hook. They haven't played outside of school in 6 month. My son doesn't even show a desire to go outside and play with kids. He prefers to play in his room by himself and sometimes with his brother. If I don't stay ontop of his homework daily from the time he gets home till bedtime he won't do it. With me being on top of his work and constantly reminding him to do his work causes behavioral issues at home. The school chalks this up to behavior problems at home, which is not the case as long as we don't have any expectations of him. In school it is extremely rare that he completes all his work. He shows no behavior problems in school except for being distracted. And even with the not paying attention...when the teacher calls on him he always gets the answer right. Everyday he comes home with classwork he needs to finish. Manytimes the classwork builds up for days. We don't know what to do anymore. Today, I totally back off of him about doing homework. Yes I reminded him a couple of times, but that is it. He did no homework. We feel this is the only way for the school to realize that this really is a problem in school as much as it is at home. He really belongs in a gifted class due to his scores in state testing with an IEP. This will never happen infact they suggested he enter an inclusion class in JHS, so that the special ed teacher in the class can help him along. All this seems so wrong to us. We let him know about inclusion and he said "forget that, why can't they put me where I belong?" We told him because he doesn't complete his schoolwork. His response was a blank face. He had no response and dropped the topic. We need advise. Do we ignore the homework. Consider homeschooling. Request he be retested. Keep going with the 504 that has proven to be usless. Teachers always find a way around them. Let him know that great state scores aren't going to help him any so he should take it easy and shouln't stress over answers. (The quicker he is done the less time he has to sit there) I know some of this sounds horrible but I am now at a loss, frustrated and tired. I feel that the school is letting him down and why should he be a participant in making the school look good and help to get their score up. Please, any advise would be appreciated.

Anonymous said...

The school meeting that has been hovering over our heads since our 8yr old was 'formally excluded' in mid June, is finally happening on Monday. My husband and I have been left hanging all summer without answers. I can feel my body tense just talking about it. We have two advocates (DSRC and a hired advocate) joining us. I want to hide under my blankets.

Anonymous said...

kick butt and demand compensation for your son1 what they did to him was disgusting!

Anonymous said...

Wishing you and your family so much luck. Hope you get all the answers you deserve/need

Anonymous said...

Make certain that you stress to your advocates you and your husband expect them to use the law as part of what they are advocating about. Since 2005 it's been the law in Ontario to treat special needs people properly, giving them dignity etc and also to accommodate their needs.

Kicking him out of school early no matter how it's phrased is kicking him out. Not OK, against the law and should never be allowed.

Stand tall, put on your big girl panties, find your backbone and fight Denise! I know you can! Yes the pre-stress and anxiety must be extreme right now but you can do it! Beckie and I know you can. We'll be rooting for you!

Anonymous said...

Thanks all. I need some boosting up. I have great advocates with knowledge. My hubby can stay cool under pressure. I know I need to be at this meeting but I see myself crying (rather than yelling!!) because I am sooooooo angry.

Anonymous said...

Hopefully you get the out come you and your family deserve and that your fight prevents this from happening to another little girl or boy!

Anonymous said...

Your son, and our community, are lucky to have such a dedicated and fearless Mama. You do not do this alone.

Anonymous said...

.... save the crying for the ride home.....be a mother bear in the meeting!! tap into the anger and offense, on behalf of your son...not the sadness and fear. You can do this!!!!

Anonymous said...

I am sitting here attempting to write our families personal letter to the school board and parent all three children. My oldest has already melted on me. My middle yelled at me because I wouldn't let him play with a broken hockey stick and my 3 yr old is crying because.....well, because she is 3 and she doesn't want to tidy the play room.

amy said...

I live in Warner robins GA and I'm going through the same thing! Nothing close to help! My son still doesn't have an IEP I have him doing school at home through k12 cyber academy which helps but he still needs an iep and occupational therapy and other help but everything is in Atlanta 2hrs away I can't afford to drive there not even once a month let alone once or more a week!

Anonymous said...

Our 7 yr old son has a teacher he calls the "Queen of Cruel," due to the
way she treats the students. We live in a rural area, therefore, a small
school with only one teacher per grade (there are only 15 in students in
his class). At a recent meeting (to work on a Ziggurat), she expressed
wanting to build a relationship with our son who is SCARED of her, the sped
teacher pointed this out to her. Her response: gloatingly "they are all
scared of me." Prior to this school year he was started on anxiety meds,
but according to the teacher and principal his anxiety is excessive. We
feel it's due to her and don't want to increase the meds due to her bad
example. How do we work with a teacher like this? FYI...the principal seems
to be in her pocket.

Nonetheless, his attitude and behavior towards us is in decline since he
repeats her negative comments to us. For example, you already said that
once you don't have to say it twice or three times, I have 2 ears to hear
you don't need my eyes, too, etc. We are not sure how to handle this along
with his increased impulsivity...

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