Posts Tagged ‘IDEA’

My child has joined a ‘mainstream’ classroom but is struggling. What can help?

August 26, 2011 15 comments

Today’s “Got Questions?” response again comes from Simon Wallace, PhD, Autism Speaks director of scientific development for Europe

The U.S. Individuals with Disabilities Education Act (IDEA) requires schools to include children with disabilities in the least restrictive classroom settings that are possible. At the same time, studies show that different levels of so-called “mainstreaming” present different benefits and challenges.1 And parental preference often varies.2 So the first question to ask yourself is “what type of school placement is the best for my child?”

For instance, you have the option of full inclusion, with all classes taught in a mainstream environment, or partial mainstream, with some proportion of classes taught in a more supportive setting. I also encourage parents to keep in mind the potential advantages of a specialist autism school. Making these decisions should always involve a consultation between parents, teachers and the pupil with an autism spectrum disorder (ASD).

Beyond teaching support, we know that bullying and social exclusion affects the mainstream-school experience of many children with ASD. A recent survey estimated that 44% of children with ASD have been bullied.3 Bullying, in turn, can lead to an increased social isolation and mental health difficulties. Another study suggested that the support of classmates is very important to making the mainstream experience a success for the student with autism.4

One method for encouraging peer relationships is a technique called Circle of Friends, where the child with ASD is at the center of a peer group. This group periodically works on specific goals. Another method, which avoids such a strong focus on the child, is to work on social skills in private or with a group of other children with ASD.

Of course, teacher training remains pivotal to supporting the success of children with ASD in a mainstream classroom. Federal law requires that teachers make reasonable adjustments to their teaching strategies and classroom environment to accommodate the needs of pupils with disabilities. In particular, teachers should be encouraged to adjust the content and delivery of the curriculum, to consider the sensory needs of the pupil, and to welcome the input of both parents and special-needs students when planning their educational programs.

Here are some useful resources, along with references to the studies I mentioned:


1. The Autism Speaks School Community Tool Kit
2. The Asperger Syndrome/HFA and the Classroom chapter of the Autism Speaks Asperger Syndrome and High Functioning Autism Tool Kit
3. Bullying and ASD: A Guide for School Staff (UK)
4. IEPs, iPads and Bullies: 10 Tips from a Dad Who’s Been There, a recent Family Services blog from dad James Vaughan

1. Full inclusion and students with autism. Mesibov GB, Shea V. J Autism Dev Disord. 1996 Jun;26(3):337-46.
2. Parental perspectives on inclusion: effects of autism and Down syndrome. Kasari C, Freeman SF, Bauminger N, Alkin MC. J Autism Dev Disord. 1999 Aug;29(4):297-305.
3. Bullying among children with autism and the influence of comorbidity with ADHD: a population-based study. Montes G, Halterman JS. Ambul Pediatr. 2007 May-Jun;7(3):253-7.
4. Inclusion as social practice: views of children with autism.  Ochs E, Kremer T, Solomon O, Sirota K. Social Development. 2001;10(3):399–419.

Got more questions? Please email us at Thanks.

A Vision for New Jersey’s Autism Community

August 25, 2011 2 comments

This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.

As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)

Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.

Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.

Creating a New World

Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.

So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”

Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.

Securing Funding

One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.

Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.

The Transition Tool Kit

Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.

Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.

We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.

To read full article, please visit NJ Spotlight.

Family Services Office Hours – 8/17/11

August 18, 2011 2 comments

Office Hours, a new resource available on the web at will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at

Here is the transcript:

Welcome to Office Hours offered by the Family Services Department at Autism Speaks. Today’s Office Hours is staffed by Marianne Sullivan, RN, MN, Assistant Director of National Outreach and resources.
Back to School for Children with Autism
What we can do to make the transition back to school as smooth as possible for our kids with autism? Over last few weeks we’ve highlighted ways to reduce the stress associated with back to school; one common theme: plan and prepare ahead of time! Do you have a tip you to share with other parents?
Comment From Guest 

I took my son to his new school several times to tour and meet important people. I started at the end of the year before his move and had at least 2 visits over the summer.

Hi there! Those are some great suggestions. How did it work out?
Making the time to meet and get to know the key people in your child’s school is a great way to start the new year!
Comment From Guest 

My child is transitioning from a private school to public this year..He is entering 7th grade. What can I do to ease this transition?

Thank you for your questions.Family Services offers the School Community Tool Kit that offers great ideas on how students can adapt in their new school
Please feel free to download all of our Tool Kits! They are FREE!
A great idea would be to gather a portfolio of your child’s strengths and and challenges as you introduce your child to his/her teacher
Portfolios can include artwork, writing, and other school related samples
This is also a great way to have a record of your child’s school life.
Comment From Erica 

My son is 3 and has ASD. He started pre-k at an integrated school on his 3rd birthday. We are preparing him for the new school year, which he has no problems with. My issue is the length of time. Is a full day of school overbearing to a child with ASD?

Hi Erica – Every child is different. It is an excellent question. Remember you are the parents and you know what is best for the child. It is a matter of making sure that you as a parents are monitoring the stresses or behaviors of your child to indicate how well they are doing. I would include the teacher in terms of getting them on board to monitor certain situations
Remember every plan can be adjusted based on your child’s needs!
Comment From Guest 

My child started high school this week – the increased student population and campus size seems to be giving him the most anxiety in this change…we will be meeting his teachers tomorrow evening…or, at least 7 of the 8…and have sent emails introducing ourselves. I’ve reminded him that he didn’t like the changes each time he ‘moved up’ – from elementary to middle, from middle to junior and to give himself some time to adjust. Any more suggestions?

You have laid great groundwork communicating with the teachers and have created an opportunity for continued interaction. Again, the portfolio is a great resource to go back to. It is important to see the progress of your child through the years.
Another thing you should check out is our Transition Tool Kit. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood. You can never plan to far in advance!
Comment From Guest 

I seem to be having trouble getting my sons school to understand that he needs special help at all. He has attended there for two years in the early childhood program but was just recently diagnosed with ASD. He is starting full day kindergarten and they don’t seem interested in the ideas that I have for my son such as visual schedules, help off the bus and with lunch. They have him labeled as delayed on his IEP and also don’t seem interested in changing that to a firm ASD label. How do I insist on these things?

The key is to knowing what your child’s rights are under IDEA and State law. We have a ‘Special Education and Advocacy’ Community Connections that you may find helpful.
Tomorrow we will be releasing a new Community Connections that will be targeting IEP’s as well. You can also join our LIVE Q & A tonight a 7pm EDT with Gary Mayerson as he, ‘How To Compromise With Your School District Without Compromising Your Child’
Comment From Guest 

My 9 year old son was diagnosed with HFA this summer. My question is do we allow the teacher to tell his classmates? If so, what is the best way to go about this? He attends a (wonderful) private school and they have been very helpful. Just curious if we ease some of the teasing he receives by telling his classmates?

If your child was just diagnosed, you can order an Asperger Syndrome and High Functioning Tool Kit that includes ideas how to talk to classmates about ASD. You can order one for FREE.
There is a more specific section that you may find especially helpful, ‘Asperger Syndrome/HFA and the Classroom.’
You can order the kit by calling us at 888-AUTISM 2 (288-4762) or email us at
There is a specific module of the School Community Tool Kit that deals with how to talk to your peers about ASD. You may want to share this with your child
Comment From Renee 

Son is going to the same school..but they moved him to a new teacher and classroom which is going to be difficult since he had his last teacher for 3 years..He is 17 and large for his size and doesn’t talk so what can I do to make the first couple of days go smoothly for him?

Renee we want to suggest good communication right from the beginning. Can you talk to the teacher ahead of time? Youc an tell them about your son – likes and dislikes, how he communicates, etc.
We would also want to recommend the Transition Tool Kit that you can order or download for FREE!
Comment From Guest 

WONDERFUL! Thank you so very much—just pulled from the links and my printer is going nuts! The questions sheet is fantastic! Thank you!

That is great! We are so glad that we were able to help and PLEASE keep us posted!
Renee, another though – perhaps you may want to ask a former teacher to share with his new teacher what your son’s strengths and weaknesses are. Maybe they can share strategies that worked with your son and those that may not have
Comment From Guest 

My AS son will be going from full day preschool to half day K. He did NOT get the teacher he wanted but his twin did, so he’s going in with a bad attitude. I am meeting with his teacher the wk before K starts and have a little “about Jason” booklet for her. I have to wait to get any special education help, I am told. Our school district is VERY against IEPs and 504s…

Again the key to your child’s rights are under IDEA and state law. As a parent you have the right to request that your child be assessed and that services be provided.
I recommend you provide your school with a copy of IDEA.
You have to know your child rights. Your special needs child has the right to a free and appropriate education.
Tonight Gary Mayerson will be on for a LIVE Q & A to discuss ‘How To Compromise With Your School District Without Compromising Your Child’
Please feel free to join us at 7pm EDT TONIGHT!
Comment From Jenny 

4.5 boy with pdd-nos. Is there an example of a notebook that would allow his special and integrated school teachers, aids, and PT’s to communicate with eachother and me on progress/ concerns?

Hi Jenny, thanks so much for your question. Please visit our School Community Tool Kit Appendix that contains many forms and other resources.
Paula Kluth is also a wonderful resource. She has samples of personal portfolios that you may choose to model your child’s after
Portfolios can be in paper, audio, or video form. They are meant to serve as a record for past experiences so you can track your child’s progress
Comment From Anthony 

My son is 33 months and so far not showing any signs of autism… At what age can I stop worrying about regression?

Hi Anthony – it is good that you are on top of this. Continue to observe your child as he develops. Here is a link where you can learn the signs.
Comment From Jo 

We are a military family and have moved twice in the past year, resulting in my ASD/ADHD daughter going to two schools for K, and now starting 1st at a whole new school. 3 schools, in 3 different states. The original IEP call for school provide Speech and OT with additional OT after school one day a week. The second school cut OT because the provider essentially didn’t have time for my daughter in her schedule, she was the only provider in the county and serviced ALL the elementary schools. The new school is doing their assessment for what remains on her IEP, speech therapy. Can I ask them to reevaluate her needs for OT? And I’m worried now that they might cut her speech, if they do, she wont even have an IEP anymore. what can I do?

Hi Jo – Because military families move, there are special services, provided by the military that should advocate for your child. Operation Autism is a resource guide designed for military famlies
Autism Speaks is involved with autism advocacy efforts for military families as well. Please visit Autism Votes for more information.
‘Welcome to StimCity’ is a wonderful blog by a woman named Rachel. She is a military wife and her daughter has ASD. You may find comfort in reading her blog.
We were lucky enough to have her blog for us!
Comment From Diana 

My child is in a dod school. They dont seem to have the right placement for her but wont referr her to a school that does what should i do about this?

Hi Diana – Wright’s Law has specific information on meeting the needs of your child with special needs. You can learn more about it here.
Thanks so much for stopping by today for Family Services Office Hours. Please come back with us tonight as Gary Mayerson leads us in a Q & A ‘How To Compromise With Your School District Without Compromising Your Child’
We will see you next week! Remember to stay positive and have a great school year! Keep us posted on your progress!
As always you can call us at 888-AUTISM 2 (288-4762) or email us at

The End of the IEP and the Beginning of “Reasonable Accommodations”

July 25, 2010 15 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.

In June 2007, I graduated from high school. It was an amazing time for me. The majority of my classmates and I were off to great new beginnings. My new beginning began at Seton Hall University. “This is going to be great!” I thought to myself on many occasions before the first day of classes.

Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU.  This is when the ball dropped for me.

During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen.  Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.

In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?

At times, this led to many distractions that never would have occurred when I was younger. Sometimes I thought it was unfair. I had to advocate for my own single room in the dorms due to my social complications, extended time on tests for my reading comprehension, a note taker for my classes due to my lack of motor skills and many other complications. For someone trying to fit in it seemed like it was designed to make you stand out like a sore thumb. It even seemed as if as soon as I accomplished one of these tasks, the next semester would begin and it would start all over again for my new courses which required different accommodations.

When you add this to managing a full course load, trying to socialize with your  fellow peers, along with being involved in extra-curricular activities, it can sometimes feels like you are drowning. I mean, “reasonable accommodations” are supposed to help level the playing field, not hinder you in any way. There isn’t a “reasonable accommodation” for that.

Although getting accommodations sometimes was daunting, I was still able to get by and will be going through the same process again with Disability Support Services come this September in my senior year at Seton Hall. For several semesters now I sit up front and tape most of my classes and download the recordings onto my computer, instead of utilizing a note taker. Never would have thought of that freshman year. For those reading who are younger and not yet in college, my advice is to sit in on as many IEP meetings as you can. Learn and ask as many questions as possible.  The letters after your diagnosis don’t tell you if you need extended time or a note taker, but knowing if you are a visual or auditory learner may. Within this I would also strongly consider letting your parents be involved in some of your early decision making, especially when it includes freshman year accommodations. Independence is not grown over night and we all need that added voice sometimes to make sure we are level-headed and knowing exactly what we are getting ourselves into.

As many say early intervention is the key once first diagnosed, early intervention for those on the spectrum in college (and high school for that matter as well) is the key to ultimate success. What I’ve noticed about autism over the years is that it’s not a weakness unless you let it become one. Don’t let it hinder you. Let the advantages of who you are and what you have to offer be your ability to make it at the college level; just always know what your weaknesses are so you can be ready for whatever is to come next!



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