Posts Tagged ‘school’

IAN’s Bullying Survey: Addressing a Troublesome Issue

November 7, 2011 4 comments

By Connie Anderson, Ph.D. Community Scientific Liaison, IAN Project at the Kennedy Krieger Institute

The Interactive Autism Network (IAN) has launched a national online survey on bullying and children with ASD to begin to address this troublesome issue in the lives of children on the autism spectrum.

As Community Scientific Liaison for this national online autism research project, I hear from families all the time, and bullying is one concern they raise often. Just to make it through a school day, they tell me, a child on the spectrum may have to contend with sensory issues, social challenges, and attention problems. Add bullying into the mix and what was challenging can quickly become impossible, leading to a sense of isolation and failure. I hear of children tormented at lunch or on the playground, when a personal assistant (if any) may be taking a break. I hear of children who are provoked into meltdowns or aggressive outbursts by other children who know how to push their buttons, maybe by attacking a cherished interest. (“Pokemon is stupid.”) I hear about cases where children with meltdowns are accused of being bullies, and may suffer consequences like suspension from school as a result.

I’m also the mother of a teenager with Asperger’s, who has had his sweatpants pulled down around his knees in Tech Ed class, and been tormented at lunch until he wants to hide in the Special Ed Resource room rather than go to the cafeteria. I’m the friend of a mom who decided to home school her daughter with ASD after constant bullying made school a place so wrought with anxiety she could no longer function there.

These stories are all too common. Anecdotes from adults with ASD, children with ASD, and their families indicate that individuals on the spectrum may be especially vulnerable to bullying, and a few small studies have provided some evidence of this. Now, the online Bullying and School Experiences of Children with ASD Survey will collect more in-depth information on a variety of bullying situations from a large number of families to explore the extent of these problems in the lives of children with ASD.

I hope you’ll spread the word about the survey to all who may be interested.

Learn more about the Bullying Survey.

Read an article about bullying and children with ASD.

Family Services Office Hours – 10.12.11

October 13, 2011 3 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, 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.

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

Hi There! We are getting ready for Office Hours! Hang on!
Welcome to Office Hours! Family Services is taking questions and we are here to help offer resources and guidance!
Comment From Guest  

My son is in an EIBT program and is currently almost 3. Once he turns 3, the school district is wanting to terminate that program and place him in special ed. He’s currently in a reg preschool with a diagnosis of PDD. He definitely still needs an aid to intervene and redirect. The school district is telling me the funding isn’t there. Any suggestions on who to talk to?

Hello: Budget cuts across the nation are creating fear and apprehension, and there are real budgetary realities that school districts–all districts–must contend with. On the other hand, the district cannot simply provide services because because of budgetary concerns and if any IEP proposes to do so, again, “stay put” comes to the protection of the parents who have no choice but to move formally to protect their child’s program components
You may want to work with an advocate who can help guide you through this process. Check out our Resource Guide in the Family Services section at.
Comment From shaun lavalley 

ive got a son with assbergers and never got any help dont know wear to go

Hi Shaun! You have come to the right place. We have an Asperger Syndrome and High Functioning Autism Tool Kit that would be a good place to start.
Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.
Comment From Guest 

my little girl is 4 an is in headstart she only get 30min of thearapy a week or thats what they tell me and i dont even know what therapy she has been going to school for the past year and hasnt made any progress

Particularly for children with autism who are often highly distractible, a 30 minute session is not adequate. You may need a private evaluation to measure this problem, and to make recommendations you can then present to the district
Hi Guest! You will need the school to do an assessment of her strengths and challenges. Based on that assessment you can develop an IEP. You need to get as much information as possible.
Comment From carla 

my son was recomended to have twice weekly speech, but the school will only give him one, they say its all he needs what can I do

Hi Carla – you have the right to do an independent evaluation and based on those results you can present that to the IEP Team.
If you feel differently than the school recommendation, it is best to get an independent evaluation. Parents have the right to recommend therapy and the amount of time the child gets for therapy.
Comment From melissa  

my little girl is 4 an has autism she is in headstart she only get 30min of thearapy a week or thats what they tell me and i dont even know what therapy she has been going to school for the past year and hasnt made any progress

Hi Melissa- We answered your question earlier. Do the info we gave help?
Comment From amy  

Our local school district won’t provide any services for my son because he reads above grade level, so his autism “does not have an educational impact”. He did not speak in sentences at school or write anything. I think that impacts his education, but they kept going back to the reading level.

Hello Amy – The IEP team members need to be in agreement on the services a child requires. If you feel additional services are needed, ask for an assessment that will give you information about the child’s limitations. Objective data measurements will spell out what services the child requires.
Comment From melissa 

my daughter is 4 an cant talk she is still in diapers an she is still on the bottle i dont think the school is helping her any what can i do

Hi Melissa – If your needs are not being met, you have to speak up for your child’s rights. Parents are a VITAL member of the IEP Team! You are your child’s best advocate. Your child is entitled to an education that is tailored to his or her special needs and a placement that will allow them to make educational progress. Here is a link that you may find to be helpful!
Comment From Guest 

I have a year old son that attends an Early Interention school for 2 1/2 hours 3 times a week, and during that time they give him a 1/2 our of speech and 1/2 hour of O/T. They speak highly of him and say he is doing great but when I take him to a separate Speech therapy session, he will not cooperate at all screams and cries and hides under the tabe. They suggest I get him a TSS for therapy. I contacted someone they recommended and they sais they have very limited spots available and they are for kids who need 15+ hours or more of TSS services per week. I dont know what to do.

Hello- It sounds like a professional is making the recommendations for your daughter to receive more services. Ask the professional to put the request in writing, this may give you more leverage to get services faster.
Comment From Kaydell 

I keep hearing how iPads are making such a difference for some on the Autism Spectrum with the many apps. available. I truly feel that my kiddo would be one of the children that would benefit from this device considering his communication delay. It is a terrible feeling that due to the cost of the iPad I am unable to purchase a device that could make my son’s life easier. Do you know of any organizations that are offering iPads at discounted rates for families in need?

Hi Kaydell – You are right! iPads have benefited a large part of the autism community. We are thrilled to be giving away iPads in 2012, but you can also find other organizations that do as well. It is just at different times of the year, and you have to keep track! Some parents have negotiated with their school districts to get iPads for their children because they are considered a communication device.
We have a Community Connections ‘Technology and Autism’ that can give you more information!
Comment From Heidi 

What kind of resources are there in the Pittsburgh PA area for transitioning a child to a new home environment? Any recommendations in making this as easy as possible for my 6 yr old Autistic? FAS grandson.

Hi Heidi-Sounds like your grandson is moving to a new home, yes, this will require some thought and a transitional plan. I would recruit your grandchild’s school and home team to put a plan in place, and one that can be implemented in different environments.
Here is our Resource Guide where you can search for services in your state!
Comment From rachel

was pic day at school, she hated it, first she had somewere els to go, then she saw th dredded line, then it was crouded, then she was made to sit and tri to be happy… ha the photagrapher thankfully was paciant and took 4 pics. or els she would of had a prfessinal pic of her with a angy face and a sock in the air.. lol just wanted to share, thanks for everything you guys r doing

Comment From Michelle

the communication device would fall under the IEP as assistive technology.

Hi Rachel! Sounds like a crazy day! Picture day isn’t easy for anyone! Thanks for joining us and your support!
yes, I have been hearing more and more about iPads being approved by districts. Its certainly worth a try.
Comment From marisa

My two year old was recently diagnosed with autism & he’s not speaking yet. Any tips/ books on communicating especially for potty training?

Hi Marisa – If your son was newly diagnosed the 100 Day Kit will be a helpful resource. It was created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism.
You may want to speak to your speech therapist about ways you can work on your child’s communication at home
As for potty training… that is a major challenge families with autism face. This book by Ashley Hickey, ‘Successful Potty Training,’ is also helpful.
Our Science Team recently tackled this question and you can find what they came up with here!
Comment From Michelle

I personally found that sign language can help give them a language until the speech therapist and your child can work on the verbal language. There are easy signs for bathroom, food etc that will help take some of the daily frustration away.

Comment From kevin

i am having an issue with my 10 yr old son, 5th grader in school.. he is a good student, but it something happens during the day that doesnt go his way, sh just shuts down and becomes defiant to teachers and the principal, he is diagnosed with Aspergers

hi Kevin, We have 2 resources you may want to check out. The first is the School Community Tool Kit
The Aspergers Syndrome/ High Functioning Autism Tool kit is also available online. The link is in the above post.
Comment From Guest

i will definetly look into this, but are there any programs that are in the monmouth county// ocean county area in NJ

Hi Guest! You can search our Resource Guide by your state!
Hello – Your questions are right on! We have a few resources that will help to answer your questions. You can access the the IEP guide at
The other resource is the WrightsLaw website:
Comment From Michelle

I feel for you kevin, my 13 yr old will do the same thing, but it has gotten better. He has improved, keep working with your son. Today he had a terrible meltdown, but it is his first one this school year. All the others have been slight refusals and then he finally did the work. So there is hope

Hi Tashalee – You are doing the right thing by having your child evaluated. The earlier your child get diagnosed the better. You can begin early intervention and it will make all the difference. He is our 100 Day Kit created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
Comment From Tashalee

MY 2yr old goes for evaluation next week, we are preparing for what we already know, it all makes sense now. He does’t say much a few words, how do I help he and whats this about Ipads helping?

Comment From brenda

what do you tell fmaily whos not really been in your childs life for years then all of a sudden they pop in but dont want to do the tthings u suggest with your child?

Hi Brenda- The Autism Speaks Family Support Tool Kits: Parents, Siblings, Grandparents and Friends will be published this week in eSpeaks. The Guides cover the emotional reactions to having a family member with autism. The question you are asking is covered in the Parent’s Guide. Make sure you check out eSpeaks on Friday.
Comment From Tashalee

Thank you, its so wonderful to know that we are not alone.

Tashalee you can always come to us for support! Please check out our Blog: and visit our Facebook Page: for more community!
Comment From Guest

We live in Spencer Iowa, and have 2 boys (8yrs and 13 yrs) on the spectrum. We have a couple support groups semi locally and they are helpful, but I am looking for someone that can help me advocate for my children. The support groups have a lot of advice but I don’t know if I am not asking for or requesting for help in the right way. I will admit I can get very wound up, and boisterous when I don’t feel like I am being listened to. I was hoping you can put me in touch with some on who can help me by telling me if I am unreasonable in my request, or possibly join our IEP meetings to back me.

Hi Guest! You are not being unreasonable at all in requesting to have an advocate in your IEP meeting. You can search our Resource Guide by your state to find an advocate in your area!
You can also check out our IEP Guide for further information:
Comment From Amy

We live in Spencer Iowa, and have 2 boys (8yrs and 13 yrs) on the spectrum. We have a couple support groups semi locally and they are helpful, but I am looking for someone that can help me advocate for my children. The support groups have a lot of advice but I don’t know if I am not asking for or requesting for help in the right way. I will admit I can get very wound up, and boisterous when I don’t feel like I am being listened to. I was hoping you can put me in touch with some on who can help me by telling me if I am unreasonable in my request, or possibly join our IEP meetings to back me. Thank you

We are so excited to welcome Jed Baker to chat with us on Friday! Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems.
Well thanks to everyone who participated! Our hour has come to an end! You can always call the Autism Response Team (ART) members are specially trained to connect families with information, resources and opportunities.Call us at 888-AUTISM 2 (288-4762) or email us
Have a great day!

In Their Own Words – Today

September 1, 2011 12 comments

This ‘In Their Own Words’ is by Cheairs Graves, who shares her life at Redefining Typical. It through writing and pictures that she shares her journey about Dawson, her son with autism. It is the marriage of the two that makes sharing her journey complete. You can find her on Facebook here.

She tries to play with him.

He walks away.

She tries to talk to him.

He does not answer.

She tries to calm him when he gets upset.

He pushes her away.

Then he looks at her.

He smiles.

He reaches for her hand.

She takes it.

She smiles.

And they walk.

And as I watch them.

I remember words.

Words that came from my father as he would send us off to school.

With a twinkle in his eye and a nod of his head my dad would say, ”Cheairs remember-Today is the first day of the rest of your life.”

So hand in hand my son and daughter walk off to school.

And with a twinkle in my eye and a nod of my head I whisper, ”Mae Mae and Dawson remember-Today is the first day of the rest of your life!”

I breathe.

Today-Yes- Today!

Copyright © cheairs graves August 25, 2011

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Creating a Special Education PTA

November 10, 2010 4 comments
This post is written by Jennifer Byde Myers and Shannon Des Roches Rosa. For more information please visit SEPTAR and  The Thinking Person’s’ Guide to Autism.

Community is critical for parents of children with special needs. Community gives us critical emotional support and provides information about our kids’ therapeutic, medical, and educational choices. Our communities have the experience and knowledge to weigh in on our decisions; its members empathize and help us keep going when times are hard, and they rejoice with us in our children’s accomplishments.

It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA. That is what we did when we helped found SEPTAR, the Special Education PTA of the Redwood City (California) School District.

Most traditional PTAs are attached to a single school. We found that this model didn’t work for us, as most campuses in our district had only one or two special day classes, or a few students in full inclusion. So we made SEPTAR district-wide, including any family with a child with special needs, from Early Start (age three) through eighth grade. We also reached out to
teachers, therapists, staff psychologists, and community leaders.

As parents, we already had a vision of support, education and community. Forming a new PTA also takes resolve, district support, and a lot of attention to detail (at least in the beginning). But it was worth it. SEPTAR is now in our fifth year. We have become a go-to resource for our special education families, with a parent support group, a speaker series, and social events such as weekly park playdates and  “Break from Winter Break” jump house parties.

We have the full support of our District leaders, and put a lot of effort into maintaining open communication, in working with administration rather than against it. And our special education teachers feel supported; we provide grants to help our educators go to seminars, or get our kids the equipment they need. We host a bi-annual conference for parents and professionals on topics that include social skills development, and technology and communication — to help
parents get informed, and contribute to our childrens’ educators’ professional development.

Our name is out in the community now: we hand out business cards, and we attend the local Education Foundation events. During the last election cycle we even hosted a moderated debate by the school board candidates.

Below is a basic how-to for starting a SEPTA. It may look
daunting, but we somehow managed to do all this in less than six weeks:

  • Find at least five people who share a common vision, and are willing to
    pay dues plus meet together many, many times. You can find these people in your
    childrens’ classrooms, or on local email parenting boards. Ask your child’s
    teacher, OT, PT and behavior specialist too!
  • Contact your district’s
    head of Special Education and ask how they would like to be involved. You could
    also contact someone from the Board of Education.
  • Select a secretary and
    a chair from among this first group to undertake responsibilities until officers
    can be elected.
  • Organize temporary bylaws and nominations committees (we
    recommend organizing a communications committee as well).
  • Have your
    chair contact the local district PTA president, or a state representative —
    easily done by going online, and searching for your city name and “District PTA
  • Draft bylaws, working with the local state PTA
    representative the district PTA president helped you locate. This person will
    ensure that you follow state PTA guidelines.
  • Determine officers, meeting
    times, and dues amounts.
  • Set a date for the organizational meeting to
    actually form and charter the new PTA unit.
  • Have the nominating
    committee draft a slate of officers for the new PTA board. This might happen
    quickly, or it might take a while if you need to search for people to fill
    certain positions. At the very least, you must have a president, secretary and
  • Set a date for the meeting, and get this information to
    as many parents as possible. This is why you want to have a communications
    committee, which can determine the best channels for communicating to as many
    people as possible. We announced our first meeting in the local paper, via
    flyers and emails to the schools, and via email to local special needs parenting
  • At the organization meeting, follow parliamentary procedure. The
    original committee chair should call the meeting to order and state that the
    reason for the meeting is to organize a new PTA. Then a motion to start a new
    PTA is made and a vote is taken. If the motion passes (and we’re sure it will) a
    break in the meeting is taken and those present at the meeting join the
  • After the break, the newly formed PTA elects officers.
  • The
    new PTA president takes over the meeting, presents the bylaws, and has the
    association vote on adopting them.
  • The new president may then add other
    items to the agenda.
  • When the meeting is over, the new president needs
    to sign a few papers which make official the new charter.

When the paperwork is complete the state representative who guided you
through the process will call the State PTA to get the official Employee
Identification number (EIN) so the new PTA can open a bank account and begin the
actual work of the PTA — making a difference for your local special needs

At every SEPTAR association meeting, we have parents
lingering, talking, conspiring, connecting – taking part in a community that
understands them and their kids, and wants to support them fully. With a little
organized structure, our PTA provides resources, camaraderie, and the
opportunity to come together as one community.

Please keep in mind that PTAs are non-profits, which must meet certain criteria to maintain
their non-profit status — so please check with your State PTA before randomly
filing taxes and signing checks!

In Their Own Words – Will’s Angel

June 29, 2010 18 comments

We recently received the following e-mail and poem submission:
Two years ago my son had a very trying school year. It was riddled with setbacks and aggressive behaviors. This year was the opposite. He and his classmates were introduced to another new teacher but his year was quite different. She inspired my words below, as I imagine the feelings through my son’s eyes. I wanted to share it with you.

Before we met, I walked a world,
Couldn’t see quite eye to eye,
My mind held back ten thousand words,
Like wind against the tide.

You found a way to speak to me,
You found your way inside,
You called me out to play with you,
You found me where I hide.

I like to do the things you ask,
I try so hard each day,
I like it when you smile at me,
It tells me I’m okay.

You teach me not to be afraid,
I watch you every day,
Your face says you are brave and kind,
And fear won’t win today.

You gave a gift I can’t repay,
You wrapped it gracefully,
My mom says you reached in your heart,
And gave me dignity.

I think that there are angels now,
But the right time it must be,
And I thank God for knowing this,
And for sending mine to me.

This “In Their Own Words” poem was written by Julie Jones, a mother who has a son with autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Categories: In Their Own Words Tags: , , ,

Just Like Them

June 21, 2010 2 comments

This is a guest post by Nora Rubovitz, Autism Speaks Family Services Project Manager, and Ali Hines, Family Services Associate Manager of Communications.

A few months ago, the Family Services team received a call from a fourth grade teacher at PS 7 in Brooklyn. Through a “Penny Harvest,” her class had raised $900, $300 of which they decided as a group to donate to Autism Speaks. Last Tuesday, we traveled out to Brooklyn to visit their classroom and accept their generous donation in person.

“This is Nora and Ali from Autism Speaks!” Mrs. Pavane announced to the 100+ students in the auditorium. A little girl in the class walked up to the microphone to announce that she had helped her class choose Autism Speaks because her older brother is on the autism spectrum, and it would mean a lot to her family. We walked up and thanked her very much for thinking of us and sharing information about autism with her class.

“Does anyone know what autism is?” we asked at first. We got little to no response. We didn’t think reciting the DSM-IV criteria would really captivate the fourth grade crowd, so we decided to read the story “Since We’re Friends” so they could understand a bit about the issues faced by children with autism. The book conveyed to our audience that children with autism are just like them; they are fun and wonderful friends who might sometimes need a little bit of support. Much to our surprise, given our recollection of our attention spans at that age, the class seemed fascinated by the story. A boy and his friend with autism were swimming, playing baseball, running around and having fun! The only difference was the few times the boy needed to push his friend a little to make sure he was comfortable and calm. Through reading the story, what may have first sounded to them like a scary disease now came across as something that affects lots of kids. Kids just like them, who they can help, simply by being their friend.

By far the highlight of their morning came next. We decided to play a video filled with pictures and facts to help the class to see a little more about autism. We figured the shorter the video the better for this age group, so we chose a two-minute video often used at Autism Speaks events. We know the kids loved the pictures and were intrigued by the facts displayed, but we could really see their enthusiasm based on the loud claps and high voices coming from the audience while Alicia Keys “No One” played in the background of the video. They were up on their feet singing every word while watching our video. We think Mrs. Pavane learned during our video that all she needed was a little Alicia Keys playing in her math class to really get the group going during multiplication lessons!

At the end of the presentation, we took questions from the group. Hands flew up immediately when Mrs. Pavane asked who would like to ask us something about autism. Is autism contagious? Can you only get it when you’re a little kid? How can I help someone with autism? We were floored by how interested this group of 10-year-olds was in learning more about autism, and how much they wanted to help. We handed out Autism Speaks awareness bracelets, and smiled as the kids walked out wearing their puzzle pieces with pride, armed with a new understanding of autism. One young boy held back from the group as they walked out, and turned to us with a dollar bill: “Here is one dollar for autism.” That, in itself, proved what a wonderful morning it had been. All it took was a simple story and a music video to teach a group of 100 4th graders about autism, and to inspire them to help make a difference in the lives of kids with autism. Kids who are just like them.


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