Autism and IEPs: When Knowledge is Power

It’s that time of year again when parents will meet with their school districts and write their Individualized Education Programs or IEPs. These are mandated by the Individuals with Disabilities Education Act (IDEA) and outline the individual educational needs for each child with special needs. My close friend, who has her Masters in Education once told me, “if every parent knew their IDEA laws, the school systems would go broke.”

Parents and caregivers of a child with an autism spectrum disorder (ASD) need to be educated as an advocate in many areas of their child’s life. Picking up, reading and understanding the IDEA fundamentals from a recent copy of “Wrightslaw: Special Education Law,” will give invaluable insight for parents. There’s no excuse for being unprepared for these meetings, which will ultimately play a large role in determining a child’s functionality and success.

I recently read about a mother whose argument with her school district was related to her son’s handwriting. Her struggles to have her child use assistive technology had merit.

A recent Japanese study involving middle and high school aged children showed that children with autism, along with Tourette’s Syndrome, ADD and other co-morbid diagnoses, had substantially lower grades when forced to handwrite their assignments. The implementation of computer keyboards and typing devices raised their grades from C and D averages to A’s and B’s.

Furthermore, studies showed that by allowing these students to complete homework assignments at school and not at home, grades also increased as a result.

Parents and caregivers who come prepared to IEP meetings are a far stronger force than most realize. By law, they can never be excluded from these important decision-making meetings. Parents have the right to be heard and research before meetings take place will prove to be invaluable.

Knowing when a transfer to another school or district is allowed is extremely important. Each state has its own interpretations of how and when they are willing to transfer or contract out for appropriate services. Knowing these rules will keep parents from spinning their wheels and show school administrative teams that they are well-informed and know their child’s educational rights.

My oldest son has a 504 plan, which is not as powerful as an IEP, but certainly provides for appropriate accommodations. His 504 plan includes having no homework, the use of a keyboard instead of handwriting, allowing for quiet time and allowing for frequent healthy snacks. These stipulations can all be a mandatory part of a child’s program, but will rarely be offered. I even learned to bring in a supportive advocate at times when I knew it would be a struggle.

If the system does not provide, they must accommodate. Test scores and a specific diagnosis are the baselines for constructing a plan that will be therapeutic, stimulating and educational for a child’s special needs. The IEPs and 504 plans also offer greater protection than those of typical students.

Leverage lies within the laws and a child with special needs is entitled to as much as double and triple the tax monies as the funding for a typical child. This should put parents in a position of empowerment, not groveling. 

I moved all the way across the country to New York where my son’s IEP would finally be written to accommodate his special needs. He was then able to take advantage of New York’s five-day-a-week speech program with a speech therapist who was fully acquainted with current autism research and therapies, along with every other imaginable accommodating resource. My son went from mumbling and speechless to fully conversational in two-months. 

He also began playing board games, making eye contact, singing, dancing and most of all, was happy — all within only two months. I was completely in awe of the provisions given to my son by the state of New York. I was also in disgust of the state where I came from. 

If I had to pay out of pocket in my former state for the services he was receiving in the curricular year, it would have cost me in excess of a half-a-million dollars. Very few families have this type of money, which is why so many get deprived of services in non-friendly states. By the time my son has finished his two years of Early Intervention before starting Kindergarten in NYS, he will have received well over a million dollars worth of therapy. I did not have to beg or borrow, these services were given to my son on a silver platter.

Had we not moved, my son would not have received appropriate therapy and would have cost taxpayers anywhere between 3.7 and 77 million dollars in his lifetime, depending on the eventual long-term services he would have required such as assisted living, medical, educational, personal and other therapeutic needs.

If I wasn’t educated about the laws, I wouldn’t have known what he could and should be getting. It’s despicable and injurious that so many states allow for this. A fellow parent of a child with ASD in the state where I lived has successfully sued the school systems at least four times. Despite this fact, the schools have not changed and are still non-accommodating.

Clearly, knowledge and leaving the door open to move are essential. Keep in mind, because of the imbalance of services across the country, the state a child lives in will determine the rest of his or her life. In many cases, even just a move to another county will make the difference. In other cases, like mine, moving over 3,000 miles away did the trick. If you don’t know what your child needs and what you can and cannot ask for, in most cases they won’t tell you either. Therefore, you need to be prepared and educated.

Many head-start programs are beginning to accommodate the early intervention needs of a child with ASD. Each program is unique, and each teaches a child with ASD in different ways.

Be prepared. A child’s autism diagnosis changes lives forever and getting accommodating therapies from school systems will typically ensure that a child realizes his or her high functioning potential, which will prevent them from falling between the cracks.

Knowledge of the IEP process and IDEA laws will enable parents and caregivers to be an excellent advocate and resource for their child’s growth, future, functionality and ultimate success.

3 Responses to Autism and IEPs: When Knowledge is Power

  1. Thank you. I agree with everything you said. Parents should do whatever they can to attend or send a family rep. to their child’s IEP.

  2. Kristina says:

    Great article! Do you happen to have the info on the studies you mentioned above with regard to homework, because that is a huge issue we’ve had (with no success with the school)and it would be great to have those to help support our request to terminate homework.

  3. I do have a question, if anyone is still paying attention to this thread. We are a military family, we move around a lot. As a result, my daughter was stripped of her IEP when two districts in two separate states determined she didn’t need those particular services anymore. I disagreed, but having Aspergers myself, I find it very difficult to understand the paperwork they give me and it’s very difficult for me to ask for help. My own experiences have taught me that if you can’t do it for yourself it doesn’t get done at all. How do I help my daughter? They refuse to give her an IEP, she doesn’t qualify for a 504 (or so I’m told) and when we tried gifted, she qualified academically, but because her initial IEP team placed her in Kindergarten a year early for the added structure, she isn’t being granted an gifted services now. In class, she’s learning to tell time on an analogue clock, a skill she’s had since she was five because she wanted to learn how so I taught her how. She’s so intelligent, but the school is holding her back and I don’t know what to do anymore. We’ve looked into K12 since they start academic assessments to determine ability in the 3rd grade, but there’s a cap this year and she wont make the cut. I feel like I’m failing my daughter because I’m on the spectrum too. She has a diagnosis on file with the school of Autism with ADHD, I just don’t know how to make them see it. She’s so well behaved because she’s rigid with the rules. They just don’t see it.

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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