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LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5

January 20, 2012 15 comments

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

2:56
Hello everyone! This is Dr. Dawson. Thanks for joining us today to discuss the new DSM changes. We’ll be starting momentarily.
2:57
Hi All! Thanks so much for taking the time to be with us today. We look forward to the chat!
3:00
Comment From jennifer

Does the new DSM effect children already diagnosed…I have two with PDD-NOS….will their services change?

3:02
Hi Jennifer, This is Dr. Dawson. The new system has yet to be implemented. But once it is implemented, if your children were assessed again using the new system and, if they didn’t qualify for an ASD, theoretically yes, if could affect their eligibility for services. Autism Speaks will be monitoring this carefully. We want to make sure that no one is denied the services they need.
3:03
Comment From JenB

I read the new definition on the NY Times site. Is this the final definition or could it change? Would children who when first diagnosed met the criteria but who have been helped by intensive therapies and may not still meet them to the same degree (but still need therapy to continue to gain ground) be kicked out?

3:05
Hi Jen, This is Dr. Dawson. The APA committee that is developing the new criteria is in the process of finaling the criteria. They expect to be done in December. Then, they will conduct field trials to see how the criteria work in the real world. You ask a good question: What if a child no longer qualifies for a diagnosis because they received treatment? This will have to be decided byindividual school systems and other policy makers. We will be working hard to advocate to make sure that those children who are improving but still need services are able to retain them.
3:06
Comment From Robin

will children who are already classified be “grandfathered” per se or will we lose our classification and our services

3:07
Hi Robin, it’s Lisa – Services should be based upon the child’s needs. We will be monitoring it to make sure that individuals get the services they need.
3:09
Comment From Tavia

What does DSM stand for? Thank you.

3:09
Hi Tavia, This is Dr. Dawson. The DSM standards for the Diagnostic and Statistical Manual of Mental Disorders by the American Psychtriac Association. It is the manual that doctors use to diagnosis conditions such as autism.
3:10
Comment From Jeanie

What about children who currently have a diagnosis of PDD-NOS or Asperger’s? Will they have to be reassessed once the DSM-V rolls out, or can their current diagnoses stand?

3:11
Hi Jeanie, this is Lisa. Although it is possible that some service providers or funders could request a re-evaluation, especially if your child is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, most social service programs require an assessment to determine eligibility.
3:12
Comment From Rebecca Pavlik

I am very scared about this new diagnostic criteria. My son is PDD-NOS I have read as many as 85% of those children will be ruled out with the new criteria. My son has a 2 year developmental delay. He is ten reads at a 1st grade level, cannot write legibly, already receives basically no services outside of SSI and Medicaid. What will happen to all of these kids?

3:12
Hi Rebecca, This is Dr. Dawson. The study discussed in the New York Times article is very preliminary and probably overestimated the number of children who would be denied a diagnosis with the new system. So, hang in there. Given that your child has a two year developmental delay, he should qualify for services regardless. In any case, we are going to monitor this carefully to make sure that kids don’t get denied services under the new system.
3:15
Comment From melissa

what can we as parents do??

3:15
Hi Melissa it’s Lisa – As parents we need to stay updated and understand the guidelines and we need to continue to advocate for the services that our children need.
3:16
Comment From Bonnie

Will it be posted somewhere so we can read all the changes that are being made?

3:17
Hi Bonnie, that’s a great question. the American Psychiatric Association (APA) has a website that details all the information and background about the proposed changes to DSM-5. Here is a link: http://www.dsm5.org/Pages/Default.aspx. Thanks, Lisa
3:18
Comment From Guest

What is most disturbing to me is that the powers that be seem to see this as a way to solve the autism epidemic. Is there a governing board higher than the APA that keeps this in check?

3:19
Dear guest (at 3:12), This is Dr. Dawson. The proposed changes in the DSM will not “solve the autism epidemic.” In fact, research has shown that the broadening of the diagnostic criteria only account for a portion of the increase in autism prevalence. Approximately 50% of the increase remains unexplained. Autism Speaks is committed to understanding why there has been a dramatic increase, focusing on possible environmental risk factors that could be contributing. We are currently funding a study to get more accurate estimates of the prevalence of autism in the US and around the world and many studies focused on environmental risk factors. It’s up to all of us to work together make sure that the changes in the DSM don’t end up discriminating against people who need services.
3:21
Comment From Mara

How will this change affect our kids as they grow, will they still be protected under American’s with Disability Act?

3:21
Hi Mara, your question about protection under the American Disabilities Act (ADA) is a great one. Fortunately, autism will continue to be protected under the ADA. The proposed changes have nothing to do with changing the disability status of autism.
3:22
Comment From Guest

I have 2 male Grand sons non verbal autistic ages 8 and 5 already getting help. Do you think they will stay on the program?

3:22
Hi Guest it’s Lisa – the services that your grandsons are receiving should continue to be based upon their needs. It will be necessary to monitor their progress to make sure that their needs are being met.
3:24
Comment From Will

Why is Autism Speaks adopting a “wait-and-see” approach with regard to the outcome of this redefinition of what falls on the spectrum, and what steps are you prepared to take to insure that this change does not marginalize those currently considered to be high-fuctioning/Aspergers/PDD-NOS?

3:25
Hi Will. This is Dr. Dawson. We really don’t know yet how the new system will influence the ability to receive a diagnosis or services. The study discussed in the New York Times today is on a very small sample with old data and only included higher functioning persons. So, they are likely greatly overestimating the impact of the new system. We are designing and funding a study that will examine the impact of the new diagnostic system on diagnosis and access to services. We are also working with policy makers and insurance companies to make sure that people are not discriminated against when the new system is implemented.
3:28
Comment From Chone

I’m trying to ask a question in the chat but it isnt posting…. So here goes…. When can we expect our children to retested? And once retested will a new IEP need to done? Should we contact our schools and teachers now to find out? Personally I would really hate to wait until the middle of the next year

3:29
Hi Chone it’s Lisa – most likely you will still follow the current IEP, until your child’s annual review. Your child’s IEP should be developed based upon his or her strengths and challenges. As a parent you can always request an IEP meeting to review the goals and services.
3:29
Comment From Maria Lopez-Torres

in an article I read in the New york times it said that they are using a 1993 study for the changing the new criteria in the DSM, do you know if that is the only study they are going by or are they using any new study’s?

3:30
Dear Maria, the 1993 study referred to in the New York Times today came from a presentation that Dr. Fred Volkmar at Yale gave to the Icelandic Medical Association this week. However, that study has not gone through the peer-review process that research studies typically receive before publication. There is another study that was published in the June 2011 edition of the Journal of the American Academy of Child & Adolescent Psychiatry (JAACAP) by Mattila et al that reached a similar conclusion although the figures were very different. That same journal has a wonderful editorial by one of the members of the DSM-5 Neurodevelopmenatl Disorders Workgroup, Dr. Francesca Happe. Thank you for your question.
3:31
Comment From Vanessa in NC

What is behind the push to change the way ASDs are classified? I just don’t understand the rationale. Why lump everyone together? Our son’s needs, as someone with Asperger’s, are largely different than some of his peers at school who have a “classic” autism diagnosis and have more acute cognitive deficits.

3:33
Hi Vanessa, This is Dr. Dawson. The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger Syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used for your son, who has Asperger syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger syndrome and High Functioning Autism in the current system has to do with how much speech the child had by 3 years of age. It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – ASD. In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions (e.g. GI distress) and genetic etiology (e.g. fragile X). While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they deserve.
3:34
Comment From Jason

Hello. My question is whether there are plans to look into the proposed changes to the diagnostic criteria with a more representative sample of children with ASD/Aspergers/PDD-NOS before the changes actually take place?

3:34
Hello Jason, your question about whether there will be any testing or validation of the proposed changes before they are implemented is a great one. The answer is yes, there will be a number of “field testing” studies conducted between now and the final publication date, which is expected to occur in May 2013. Thanks for participating in our chat today. Lisa
3:36
Comment From Guest

This change will effect only new diagnosis right? I mean you can’t take away a diagnosis? Can you?

3:36
Hello Guest (at 3:26). This is Dr. Dawson. The concern here is if a child (or adult) needs to be re-evaluated, they would be evaluated under the new system. We will be working hard to make sure that this won’t result in denial of services if the child no longer meets criteria for an ASD. This may need to be an advocacy effort state-by-state and we are commited to doing that, if necessary.
3:42
Comment From Tricia

It seems this is going to make it very difficult for families. My son has many of the service and he has come so far with them, but only with them. He has disabilities across the board, at least some in every area. Seems like kids like him who are improving are going to be left out in the cold if families are middle or low income.

3:42
Hi Tricia, This is Dr. Dawson. We don’t know yet what impact the new system will have. The study that was discussed in the New York Times article today likely overestimated the impact. If the new system does end up excluding some people from a diagnosis of ASD, it will likely be those with higher cognitive cabilities. If your child has disabiltiies across the board, he should qualify for services, even under the new system. That said, I agree that we don’t want to make obtaining services any more difficult for families. Families are struggling to get services as it is. Autism Speaks is commited to ensuring that the new diagnostic system doesn’t discriminate against people, especially those with low incomes or those with higher cognitive abilities.
3:43
Comment From Sue

I’d like to see some discussion about how these changes may impact adults with ASD. Please discuss how many adults with AS or HFA need significant supports to transition to independence and to maintain independence. Also,they may have high comorbidity of mood and anxiety disorders. These changes may take us backwards in our understanding of complexities of ASDs and quality of life in adulthood.

3:43
Sue, we share your concerns about how the changes may impact adults with ASD, especially those who fit into the more abled end of the spectrum. Your question about how many of these adults require supports for transition to independence is a good one. Unfortunately, this type of epidemiological research has not been conducted to date so we don’t have a good idea of what % of individuals meet this criteria. Quality of life during adulthood is a significant concern for us and one of the reasons we helped to develop Advancing Future for Adults with Autism, a consortium of organizations working to redefine the future for adults. Please link here for more info on AFAA. (www.afaa-us.org)
3:44
Comment From Peter Faustino

Hi Lisa and Geri – Thank you for doing this live chat. It’s clear that there is so much misinformation that it scares many people into worrying if programs and services will change. I wish the APA were doing more to educate the public about these changes. While I agree with everything you have said, do you think that pediatricians (often the first line of defense) will be hesitant to diagnosis autism and therefore slow early intervention? Right now the dx of PDD-NOS is used for young children showing signs of autism. With Early Intervention they are making tremendous progress. What can be done to share these unintended effects with APA?

3:44
Hi Peter it’s Lisa – this is a great question. We know how beneficial early intervention can be and we must continue to build awareness around the signs of autism so that children who qualify can get services as soon as possible. We must also continue to educate pediatricians as well as families about the signs of autism and the importance of early diagnosis. Thanks for joining us!
3:48
Hello Guest at 3:37, insurance coverage is an important issue to Autism Speaks and we don’t expect the DSM 5 changes to have a significant impact. All of the 29 state laws that require health plans to cover autism treatments have language in the definitions that apply to latest definition of autism spectrum disorders. So these laws will not be impacted by these changes. However, if a person does not meet the criteria for ASD under the new DSM, a doctor may choose or have to use another diagnostic code. Thanks for this question. Lisa G
3:48
oops. Here comes the question…
3:48
Comment From Guest

For some reason, these are not posting ot chat, so I will try one more time. Any ideas regarding the affect of these changes on insurance coverage for OT, PT, ST? I know that there have been great gains recently, with new laws put into use. I am a bit nervous that the new changes might affect our recent progress.

3:49
Hi everyone,
Your questions don’t automatically post because–fortunately–there are hundreds of you joining us.
3:49
We’re answering as fast as we can!
3:52
Comment From Michelle

How will this affect kids in the public schools seeking IEP services? I know in some cases, services are denied if they do not fit in the child’s specific diagnoses.

3:53
Michelle, your question about IEP services in public schools is a great one. Generally speaking, a diagnosis of autism is sufficient to permit a student to receive special educations services with an IEP under IDEA and we do not expect that to change under the new DSM-5 criteria. However, for those who no longer meet the new criteria it may become more challenging to qualify for an IEP. Of course, environmental accommodations are available through 504(b) if the student needs it. But make no mistake, we are very concerned that some students with autism may find it more difficult to get the support they need. Autism Speaks plans to closely monitor this situation and advocate where needed.
3:54
Comment From lisa

what is g.i. distress?

3:55
Hi LIsa, This is Dr. Dawson. Many persons with autism have associated medical conditions, such as sleep problems, gastrointestinal problems (GI distress), and seizures. Under the new system, the doctor will be asked to note whether or not the person has these conditions because they can greatly interfere with a person’s ability to take advantage of behavioral and educational treatments.
3:57
Comment From Dianna

One of my granddaughters is now a highly functioning autistic but that’s only because of my daughter and son-in-laws’ efforts and home-schooling. She will never be able to support herself or live alone despite all her advancements. I see a similar question was proposed earlier but if she is denied her medication she will definitely regress. It seems like it’s just another burden to put on our autistic population. She’s better, so she may not qualify when she’s reevaluated, so no meds, so she regresses, then reevaluated, back on meds, gets better, then fails revaluation, etc. Is this something you, Autism Speaks, will be trying to prevent? This cycle of passing evaluation / failing evaluation?

3:57
Hi Dianna, it sounds as if your daughter and son-in-law have done a great job advocating for your granddaughter. We will need to carefully monitor the effects of any possible changes in service. It will be important to keep data as to any changes in skills as a result of a change in service. We are working hard at Autism Speaks to provide tools and resources to improve the lives of all that are living with autism, including a grandparent’s support kit as well as a transition tool kit. Please visit the Autism Speaks website www.autismspeaks.org Thanks, Lisa
3:58
Comment From Jeff

Previous reports had mentioned that Asperger’s syndrome might be eliminated as a diagnosis entirely in the DSM V. Is this change part of what we’re discussing today?

3:59
Hi Jeff, This is Dr. Dawson. In the new diagnostic system, the subcategories of autism, PDD-NOS, Asperger syndrome, and so on, would be eliminated and all of these subtypes would fall under one umbrella term – Autism Spectrum Disorder. However, people may still want to refer to themselves as having Asperger syndrome, even though the diagnosis won’t be recognized formally by the medical community.
4:00
Comment From Beth

I would like to advocate in my state. How would I go about it? I am finishing my bachelors in Human Services and there is a great need for support here where I live

4:01
Dear Beth, we would love to have your help advocating in your state! Please visit www.autismvotes.org or contact our Government Relations department atadvocacy@autismspeaks.org. Thank you for your offer. We’ll let our AutismVotes people know! Lisa
4:03
Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?

4:04
Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.
4:06
Comment From Kathy

We’re a military family and I worry about how this might affect our son every time we move. Schools want to do their own testing and have documentation. How will this affect him and hopefuly protect him from being stripped of services?

4:07
Hi Kathy, as a military family please be sure to visit our support page for Military Families and Autism Advocacy athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm. As you obviously know, military families move frequently and need to change schools. That said, your son’s diagnosis shouldn’t change just because you move. In fact, that might violate federal education law so you should talk with a special education advocate or lawyer to make sure. Please visit our Family Services Resource Guide if you need a referral in your local area. Also, we have a Congressional Briefing on the military and autism on Jan 31st in Washington DC. Please visit www.autismvotes.org for more information.
4:08
Dear Everyone, I am so sorry we are unable to answer all of your questions. Please keep in touch through our Facebook page and follow the Autism Speaks Official Blog site. We will be monitoring and writing about the DSM as this unfolds. Thanks again for joining us. Dr. Dawson
4:09
Thanks so much for joining us!! Lisa

Family Services Office Hours – 09.21.11

September 22, 2011 1 comment

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.

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

3:03
Hi Everyone! Welcome to this week’s Family Services Office Hours! We are here to answer any questions you have about our resources and help connect you with others. So ask away!
3:04
Comment From sheila 

is there in sevices in lawrenceburg tn

3:05
Hi Sheila! Here is a link to our Tennessee Resource type! You can check for resources in your area!http://www.autismspeaks.org/community/fsdb/state.php?sid=50
3:05
Comment From Robbin 

I would like to know if there are any extracurricular activities in my area for my 16 year old son with Aspergers?

3:05
Hi Robbin! You can find lots of resources in our Resource Guide. All you need to do is click on your state, select categories like “Recreation and Community Activities” and type in your zip code.
3:06
I also suggest you order our Transition Tool Kit, it was designed specifically to help families of individuals with autism ages 14-22 on the transition to adulthood. It has lots of tips, including more about how ti get involved in the community.
3:06
Comment From Maggie 

Hi Autism Speaks. Thank you for giving us this opportunity to ask questions. I think my three-year-old son has autism. A friend of mine’s son was just diagnosed and I see a lot of his traits in my son. What should my first step be?

3:06
You can order a free copy on our website!
3:07
Hi Maggie! Thank you so much for joining us! There is a page on our website, ‘Learn the Signs.’http://www.autismspeaks.org/what-autism/learn-signsYou should also work closely with your pediatrician to be sure your son is reaching developmental milestones and to track his progress.
3:07
Also, check out our Video Glossaryhttp://www.autismspeaks.org/what-autism/learn-signs
3:09
We would also like to recommend a wonderful book, ‘ Autism Solutions’ by Dr. Ricki Robinson. Dr. Robinson will be here for a LIVE Chat on Monday, September 26th so check back for more!http://drrickirobinson.com/
3:10
Comment From Britt 

Hi Autism Speaks. My son was diagnosed with autism at 3. He is now 4. Lately a lot of people have been asking us what degree he is…and I have no idea. When he was diagnosed no oe mentioned a degree or anything like that that. Is this important to know? Does it make a difference? How would I go about finding this out? Thanks so much.

3:10
Hi Britt. Your pediatrician can help provide you with more information. However, regardless of the formal diagnosis, every child with autism is different so it is more important to focus on your child’s strengths and weaknesses and make decisions about his treatments based on what you see. You know him the best!
3:13
Comment From Connor

My wife and I are having difficulty potty training our daughter who has autism. Do you have any tips for us?

3:15
Hi Connor! Thank you so much for joining our chat. This is often difficult for families! Here are two books that we recommend!
3:15
Teach Toileting: A Revolutionary Approach for Children with Autism Spectrum Disorders and Other Special Needs
by Deborah Bialer http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523
3:15
Toilet Training for Individuals with Autism or Other Developmental Issues, 2nd Edition
by Maria Wheelerhttp://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:15
We haven’t read them ourselves but they have been submitted to our Resource Library by other families that have found them helpful, so I hope they are helpful to you too!
3:20
Comment From Britt

Thank you. Also, How would I go about finding activities for my son do? The state law here has changed for his IEP and it now says that he should have more social interaction…but we are having a hard time finding classes and activities for him that accept and understand kids with special needs. And lastly, do you know of or have any resource information for military families? My husband is AF and its likely that we will be moving again within the next two years. So I would like to get a resourceful connection if I can before then. Thanks you again.

3:21
Hi Britt, please visit our Resource Guide. You can search by state to find activities for your son.http://www.autismspeaks.org/community/fsdb/search.phpYou can also visit our Community Connections, ‘Have Some Fun Today! Recreation, Community Activities, Clubs and More!’http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:23
The Organization for Autism Research has sponsored a program called, ‘Operation Autism.’ It is a resource guide specifically for military families.http://www.operationautismonline.org/tag/military/
3:25
ACT Today! is a national non-profit organization is a mission to raise awareness and provide treatment services to families that cannot afford the treatments and services their children require.http://www.acttodayformilitaryfamilies.org/
3:25
Comment From Britt

Awesome! Thank you so much!

3:25
Comment From John

My daughter is having a hard time transitioning back to school. She is new in her mainstream class. How can I help her peers understand what autism is and why she has challenges. Thanks so much for taking the time here!

3:26
Hi John! We are sorry to hear that your daughter is having difficulties. We recently created a Community Connections, ‘Back to School: Let’s Get Ready for a Great Year’ that provides tips about how to ease this transition.http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:27
You can also look at our School Community Tool Kit in the section ‘Peers’ for more informationhttp://www.autismspeaks.org/docs/family_services_docs/sk/Peers.pdf
3:27
Comment From Sally

How do I talk with soemone in person.

3:28
Hi Sally! We have an Autism Response Team, and our trained coordinators would be happy to speak to you. You can email them directly at familyservices@autismspeaks.org or call them at 888-AUTISM2. They are available during regular business hours.
3:37
Comment From Liz

I have a 9 year old son with Autism/Aspergers. I have not been able to find a way to explain his autism to him. I need help finding a way to talk to him in a way he will understand. Is there an easy way?

3:38
Hi Liz, this is a struggle for many families. Please visit our Resource Library where we have a list of Asperger Syndrome websites http://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:38
We also have an ‘Asperger Syndrome and High Functioning Autism Tool Kit’ Tool Kit that can be downloaded for FREE here!http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:40
Comment From allison

i have a son 24 years old that was diagnosed as high functional with a photographic memory but i feel like he should be re-evaluated

3:41
Hi Allison. Re-evaluation is always a good idea if you feel like his diagnosis may have changed. You are the one who knows your child best, so it may be a good idea to trust your instincts and bring your son back to his doctor.
3:44
Comment From Colleen

What is this CARA thing I keep hearing about? Thanks for your help!

3:44
Comment From Louisa mciver

regarding the legislation that was re-approved yesterday….mandating coverage of autism therapies.

3:45
CARA, which stands for Combating Autism Reauthorization Act, was passed the the House yesterday(YIPEEEE), but we still have to wait for it to make it through Senate. For more information, you can visit this blog post by Judith Ursitt, the Director of State Government Affairs at Autism Speakshttp://blog.autismspeaks.org/2011/09/21/tell-congress-to-pass-the-combating-autism-reauthorization-act/
3:46
We have just a 9 days left to pass the Combating Autism Reauthorization Act (CARA) of 2011 before critical provisions expire on September 30th. On September 20th, the Combating Autism Reauthorization Act passed with a floor vote in the House of Representatives. Now, we need you to switch your focus again back ot the Senate. Contact your Senators to ask themto support this important piece of legislation!
3:46
Comment From Louisa mciver

The info I read says that state operated insurance has to cover autism therapies, etc. Does this also apply to group insurance through an employer?

3:46
You can click on your state to learn what is happening there!http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm
3:56
Thank you for joining us today! Our next live chat is Monday at 3PM. Dr. Ricki Robinson is going to discuss ASD and its impact on family members. She will have lots of great things to say so don’t forget to tune in!
3:57
As part of the live chat, we will be giving away ten of Dr. Robinson’s new book called Autism Solutions. So join us!
3:58
As always, if you have any other questions, please don’t hesitate to contact our Autism Response Team at familyservices@autismspeaks.org or 888-AUTISM2. Enjoy the rest of your day!

Mainstreaming Max

September 21, 2011 10 comments

The last episode, of NBC‘s of Parenthood, follows Max as a mainstream student on his first day at his new school. Here is a recap!

You can watch the full episode of ‘Hey, If You’re Not Using That Baby’ here.

———

Kristina and Adam make the difficult decision for Max to attend a different school as a mainstream student. They both try to prep Max on how best to make friends – look people in the eye and smile and shake hands.

Max’s teacher Miss Mikindoe is giving an assignment when Max loudly calls out his neighbor for writing in her book. When Max won’t let it go, Miss Mikindoe points out that talking out in class is also against the rules. The lesson continues, and Max continues to offend, talking out of turn and correcting other students. And why does he have to raise his hand? Max finally settles down, but sadly, the damage is done, as his classmates begin to make him feel like an outcast.

Max is trying to make friends by looking kids in the eye, introducing himself and extending his hand to shake. Unable to understand why this technique isn’t working for him, a frustrated Max sits down to eat lunch by himself.

Kristina stops by Miss Mikindoe’s classroom and literally begs for a few minutes of her time after not getting a response over email. Within seconds, Kristina’s in tears, describing her worry and the spying incident. Miss Mikindoe reassures her that everything’s going to be okay – but Kristina is going to have to get comfortable with having a little less control.

Kristina visits Max’s teacher for reassurance on the decision to mainstream Max. Click here to view the clip.

Many parents struggle with the decision to mainstream their child. What has your experience been? Can you relate to this?

Have you or your child had difficulty making friends? How do you cope? 

Simon Wallace answers, “My child has joined a ‘mainstream’ classroom but is struggling. What can help?” Click here for his response.

————-

Valuable Resources
In this week’s ‘Experts Speak,’ Roy Q. Sanders, M.D. expresses, “I want teachers and other school personnel to know that parents know their children better than anyone else. The parents are the experts on their child. And I want parents to remember that – even though you may feel intimidated – as parents you have the most knowledge about your child. You are really running the show. You are the expert. Don’t ever allow anyone to take that power away from you.” Visit here for more.

School Community Tool Kit: A tool kit to assist members of the school community in understanding and supporting students with autism.

Asperger Syndrome and High Functioning Autism Tool Kit

Individualized Education Program (IEP): Guide

Family Services Office Hours – 8/24/11

August 25, 2011 5 comments

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:00 p.m. EDT

Office Hours, a new resource available on the web at www.autismspeaks.org 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 familyservices@autismspeaks.org.

Here is the transcript:

12:58
Hello Everyone!
12:58
Comment From Melissa 

Excited for our chat today! Thank you~

12:58
We are so excited to be on this chat today. As we wrap up summer we can look back over the month of August as we discussed back to school!
1:00
Today we are going to go over some last minute strategies to transition to the new school year. We would like to introduce to you our new ‘Individualized Education Program (IEP): Summary, Process and Practical Tips’
1:00
It is a free, new online guide that provides parents with important and reliable information and advice about navigating the IEP process, created by a team of pro bono lawyers at Goodwin Procter.
1:01
You can download it for FREE here!http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:01
Another very variable resource we have comes from a LIVE Chat Gary Mayerson hosted, ‘How To Compromise With Your School District Without Compromising Your Child’
1:02
You can read the full transcript here!http://blog.autismspeaks.org/2011/08/18/transcript-gary-mayerson/
1:02
Comment From Deb 

Did anyone else send their child to school for the first time this year?

1:02
Hi Deb! Can you tell us a little bit about your child’s transition?
1:03
Comment From Deb 

He’s 4, and started pre-k this week.

1:03
How did things go?
1:03
Comment From Deb 

He’s doing well, but his anxiety is through the roof. Overall I’m pleased with his reaction

1:04
This is where transition planning comes in. It is great to prepare him by having routines or going over his day before he goes to school to alleviate some of his anxiety
1:06
Comment From Deb 

We did that, we’ve been getting ready for a couple of months. I just can’t seem to quite reach him to … smooth his feathers.

1:07
Keep trying and don’t give up! Communicate with his teacher- they may have some great ideas and teamwork is key!
1:07
Comment From Jenny 

Any good ways to handel anxiey over homework assignments? My son is in 8th grade and homework is so stressful to him.

1:07
Hi Jenny that is a very common concern.
1:09
Start with communicating with your son’s teacher about what the homework expectation is. I suggest you setup a special time each day to complete his assignments and work with the teacher to create a rewards system that will help him work through and complete his assignments. Remember, just like all other kids, your child is not any different… LOTS of children have trouble completing homework assignments. Ask family members and his teachers for some ideas how to best work through this issue
1:10
Paula Kluth has some wonderful resources that may help as well! Here is her page of ‘Readings’http://www.paulakluth.com/readings/
1:10
Comment From Arden 

We made my grandson, age 4, a book with pictures of his teachers and a story about the schedule of the day. He is in his 2nd year of pre-school throught the Special School District, and he likes going to school.

1:10
Arden that is wonderful! Great planning!
1:11
Kids with autism respond so well to predictability. We are always so glad to see a grandparent involved- keep up the good work!
1:12

The School Community Tool Kit provides information and resources for general education and administrative school staff to support a positive school experience for children with autism.
1:12
The School Community Tool Kit has some great tips and suggestions on classroom management for kids with ASD. Check out the ‘Appendix’ section!http://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
1:13
Each section is broken up and you can download each section independently – for FREE!
1:14
Comment From Jenny 

does this explain the special education rights of the parents as well as those of the child?

1:15
Hi Jenny – the IEP Guide explains this, which can be downloaded here http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:15
You can also learn more about your child’s rights here!http://www.autismspeaks.org/what-autism/your-childs-rights
1:16
Comment From Jenny 

ok great because I always feel like the schools are not telling everything

1:16
One of the most important things as your role as a parent is to be an advocate. We have provided these resources so you can do your best in parent advocacy
1:17
Comment From Brenda 

My 7 year old son has Asperger’s. He’s entering 2nd grade. Although making progress in leaps and bounds with a great IEP and teachers and professionals, he is still very immature emotionally and tantrums in front of his friends. How can we help education not only his teachers, but his classmates on his condition. He still doesn’t understand himself.

1:18
Hi Brenda- It would be really helpful to look at the School Community Tool Kit in the Appendix section. There are a lot of great resources on how to talk to peers as well as teachers about ASD
1:19
You may also want to look at the Asperger Syndrome and High Functioning Autism Tool Kit. It goes more into the details of the diagnosis!
1:20
Comment From Jenny 

My son had a teacher that played a video about Autism designed for children for her class. it really helped the other kids with how they treat him in a positive way.

1:20
Nice going Jenny and kudos to the teacher who is thinking about the needs of ALL of her students!
1:21
Comment From Jenny 

it was her idea, she was a great teacher

1:23
We have heard some great feedback on the book – ‘Wrightslaw: All About IEPS’
1:23
You can also visit the website which is a wonderful resource for ALL parent advocates
1:24
Comment From Alexis 

My son is going to school for the first time and I’m worried because he doesnt speak yet

1:24
Hi Alexis – thanks so much for this question. How does your son communicate?
1:25
I am assuming that your child’s IEP has communication goals and objectives in it that outline the way in which your child communicates to teachers and peers. It is very important that it is well defined across all of his environments
1:25
In this case it would be important to have a speech therapist involved in your child’s IEP planning
1:26
Many parents have reported great success in using iPad technology as a way of communicating
1:27
The ‘Technology and Autism’ Community Connections is also a great resource http://www.autismspeaks.org/family-services/community-connections/technology-and-autism
1:28
*Many parents have reported great success in using iPad technology as a way of having their child communicate* To be more clear!
1:28
Comment From April Shumard 

Hello! My name is April. I just wanted to ask right quick, I know the IEP is done yearly, but is is done on the yearly annaversary of the last one or is there a specific month. I am forgetful!

1:29
Hi April! I know it can be hard to balance everything! So the IEP is done annually in the same month
1:29
Comment From Sandy 

My son is 9 & going into 4th grade. I’m concerned about his ability to focus on non-preferred tasks in class (i.e. math). We worked on his summer workbook yesterday & it took him at least 45 minutes to complete 10 problems . . . and that is with me right there with him to keep him on task. He can do the work, but is so distracted it takes forever.

1:30
Hi Sandy – I think it would be great to get some support from a behavior analyst who can work to create a behavior plan that will help your son complete his task in a timely manner.
1:31
I would recommend asking your son’s teaching to ask for a functional behavior assessment
1:31
During last week’s chat with Gary MAyerson, he defined what a Functional Behavior Assessment is.
An FBA identifies the target behaviors, tracks and measures the frequency, duration and antecedents of those behaviors, and then, finally, hypothesizes as to the likely function of the target behaviors…and you need to know what the function is before you can develop and design a proper behavior intervention plan
1:33
Comment From Sandy 

Thank you – I will pull up last week’s chat and check in with the people in charge of the IEP.

1:34
Your welcome! We have dedicated the month of August to back to school and we have lots of resources in our Family Services Section so PLEASE be sure to visit!
1:35
Comment From doreen 

my son got dxsd autism and autustic spectrum disorder does he qualify for social security benefits ??

1:35
Hi Doreen – It all depends on your state, but check with your State Developmental Disability Office. Social Security is a little tricky in that it depends on a family’s income, but your son may be entitled based on his disability
1:37
Comment From Arden 

I will be attending the IEP meeting next week. Any streategies that will help me get through the process?

1:37
First of all Arden, good luck!
1:37
It is great that you are thinking about what you can do to make the process more smoothly
1:37
If you look back at earlier posts in this Q & A there are great resources that you can review
1:38
We have a new Individualized Education Program (IEP): Summary, Process and Practical Tips, a free, new online guide that provides parents with important and reliable information and advice about navigating the IEP process, created by a team of pro bono lawyers at Goodwin Procter.
1:38
One thing to remember is to be positive and promote collaboration with your IEP team!
1:39
A positive attitude will go a long way in helping to get services for your child
1:40
Comment From Alexis 

Quick Question Is a child with a developmental disability such as autism entitled to a blue handicapped placard from the DMV

1:42
That is a good question Alexis! I think that depends on that state you are in and the eligibility requirements are listed on your state DMV page
1:42
Comment From Guest 

How do you get the school to participate in the use of the school tool kit?

1:44
Great question! We have had many parents who send the PDF to the Resource Specialist at their child’s school. BEWARE it is 250 pages and it can be expensive to print. Many schools may want to print one copy to keep in a binder to have to use for all of their students with autism
1:45
There is a section for staff training included in the kit
1:45
Great work promoting the Kit to your school! Great advocacy!
1:45
Comment From April Shumard 

Do I have to wait for the yearly IEP? Can I request sooner??

1:45
Absolutely!
1:46
Under IDEA anyone on the IEP can request an IEP
1:46
It is important to put that request in writing to make sure it is well documented and that the person who is responsible receives the document
1:47
If your school is not in compliance with your current IEP it is important that you go ahead and make a request for an IEP meeting
1:48
Comment From Bonnie 

My son was taken out of a regular school in grade 2 he should now be grade 5 level. They have had him in an environment where he is with children who have been banned from all schools here. He has been out of school now for near 2 months with me fighting tooth and nail to try to get him integrated into a regular school with no relief. I have tried through politicians, the autism network in my state education department complaints etc. Any suggestions ?

1:49
Hi Bonnie – you have obviously tried through many different avenues to advocate for your child. You may want to seek an attorney. If you visit the Resource Guide under your state, you can find a list of attorneys in your state.
1:50
It sounds like you have been through a lot and I wish you and your son the best
1:50
Some parents have to move mountains to get the right fit for your child.
1:51
You are doing a wonderful job of being a parent advocate
1:51
Comment From Teresa 

My grandson’s school told my daughter that even though she had an IEP from the end of this past school year that they would still have to evaluate him for 90 days to decide if they are going to impliment the recommendations from his last IEP. Why is it they just don’t go ahead and impliment that IEP while he is being evaluated?

1:52
Hi Teresa – you are absolutely right to question this!
1:52
Assessments should have been completed in the last IEP. I would recommend a new IEP meeting to discuss this issue
1:52
If something has changed or the school is questioning that needs to be discussed in an IEP meeting
1:53
Comment From Teresa 

how do we go about getting them to do this?

1:53
Requesting the IEP meeting through the Resource Specialist at your grandchild’s school is the way to go. Everyone team member has the right to do that
1:54
Comment From Teresa 

Am I able to attend this IEP meeting. My daughter knows nothing about autism.

1:54
ABSOLUTELY!
1:55
Parents have a right to bring support or another family member to an IEP meeting
1:56
Comment From Teresa 

we have been told by the school that I am not able to attend. I actually have three grandsons with autism two that are in school. THANK YOU SO MUCH. Won’t be shut out again. this is sure nice to know.

1:56
We would like to thank you all for visiting Office Hours this week. It is so great to see the autism community so involved and advocating for our kids with autism.
1:57
Please be sure to check out our new Individualized Education Program (IEP)http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:57
We are going to be skipping next week, but will be back on September 7 from 3-4pm EDT
1:58
We will be shifting our discussion to celebrate grandparents and their connection to their grandchildren with autism.
1:58
Please know that you can always contact 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 atfamilyservices@autismspeaks.org.
1:59
Comment From Arden 

Thanks for all the info and links

1:59
Comment From Guest 

Thanks to you we have a better acknowledge about Autism !!

1:59
Comment From Jim 

thank-you for having this forum available to us

1:59
WE WISH YOU THE BEST OF LUCK! See you after Labor Day!

Transcript of LIVE Q & A with Gary Mayerson

August 18, 2011 21 comments

How To Compromise With Your School District Without Compromising Your Child

Navigating the IEP process can be an overwhelming experience. Join nationally renowned attorney Gary Mayerson as he answers live questions from parents and explains what parents can do to secure effective and appropriate programming.

Gary Mayerson is the founder of Mayerson & Associates, a law firm in Manhattan that was formed more than a decade ago as the very first law firm dedicated exclusively to serving people with autism. To date, Mr. Mayerson and other lawyers at his firm have helped more than 1,000 families in more than 30 states, as well as military families stationed abroad. He also is the author of How To Compromise With Your School District Without Compromising Your Child (DRL Books 2005). In addition, Mr. Mayerson is a long-time board member of Autism Speaks and serves as the Director of the Autism Speaks Federal Legal Appeals Project, a pro bono initiative at the federal level.

6:49
Hi all……I am going to be answering parents questions……..this is back to school time and there is quite a bit of anxiety as to how this year is going to go…..
6:52
Comment From TannersDad Tim 

When A school system decides it can no longer handle your child, how do you evaluate the place they want to send them?

6:53
Many parents have good results bringing in a behavior analyst or educational consultant to go into the recommended school
6:54
Parents have the right to assess the recommended placement, just as schools have the right to assess the student….this can be initially agreed to at the IEP meeting
6:55
Comment From Guest 

My little brother is starting preschool and he has PDD-NOS and we went to orination and he does not want to go. What do we do?

6:56
Transition planning is something that comes in handy, to create greater predictability…..but I am a lawyer, not a behavior analyst…..so this is something that really can be plotted out with the assistance of a behavior or educational consultant…
6:57
Comment From Guest 

I live in small village, my AS son is failing math and needs a tutor, i understand that the school district can/should help pay expenses, how do i encourage that to happen?

6:58
If you live in a small village….your school district is not likely to be unduly burdened with this kind of request. Your first move is an objective assessment to ascertain the extent of the “damage,” and then present the results at an IEP meeting to make the request…..
6:59
Comment From Kendalls Mom 

What happens if the school feels your child has no need for an IEP anymore? But you still think they do?

7:00
This is a recurring problem…..initially, such a move MUST be based on objective criteria…..and if you disagree and file for due process, “stay put” will protect your child in their current placement until the judge rules otherwise…
7:00
Comment From Katy 

I live in Wisconsin, where there’s massive school budget cuts. I’m concerned that it will affect the services my 3rd grader receives. Do we have legal rights to push for the same level of service, or must we accept whatever’s coming?

7:02
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 slash your IEP services because of budgetary concerns and if any IEP proposes to do so, again, “stay put” comes to the proteection of the parents who have no choice but to move formally to protect their child’s program components
7:03
Comment From Carol 

we have a 6 year old child who is not currently diagnosed with autism, but the believes the with the behaviors and patterns that he exhibits that he has aspergers. Who responsibility is it to get the testing done?

7:04
You first must REFER your child to the school distrrict for an evaluation to determine eligibility under one or more of the classification categories…and if you do not agree with the districts assessment, you can request an independent eval at district expense
7:04
Comment From Karla 

Our son turns three in November and we would like to know whether it is best , from a legal stand point, to send him to a public school first and then try to get him into a private school or not send him at all and fight the school district to send him to a private school?

7:06
This really turns on the outcome of the IEP meeting. IF the school district is offering a classroom or program that appears to be an effective to meet the child’s needs, then by all means, sign me up!! On the other hand, if it appears to be clearly inadequate, you would be moving in the other direction.
7:06
Comment From Es Mom 

I have a severly autistic son that I wanted to place in a special needs school. I have noticed that there is an extreme push by the public school for him to go there instead. Is there a reason for this? Do I not have a say?

7:07
The public school has an obligation to at least try to place your child in a public school placement before looking to private situations. You do have a say, but you need to first consider, in good faith, the public school options that are presented
7:08
Comment From Linda 

I would like to know the best way to present the need for a 1:1 aide for your child. My child bolts and is very fast. I have agreed to 2:1

7:09
A child who bolts and who is fast is a potential danger that could expose the district to potential liability. This year, we had a case of a student who bolted out of a NYC school, and was found undressing by the East River. It should not have to get that level of danger. How often does your child bolt? Is there a bheavior plan in place? These are all questions to be discussed at the IEP
7:10
Comment From Melissa in Michigan 

What is “stay put”?

7:11
Stay put is a simple description of a far more complicated statutory provision which simply means that if you bring a due process and challenge your child’s IEP, you are entitled to “stay put” in the last AGREED placement……
7:11
Comment From Jane 

Our high school contracts out for Occupational therapy for my son…what can I do to assure that he gets the service due to him, as I know that they have “skimped” on his IEP mandated time in the past?

7:12
You can test the situation by asking for service records or “session notes”….all parents are entitled to their child’s educational records…..and if there is a problem, call an IEP meeting and make sure to invite the questionable provider(s)
7:13
Comment From Mitchells Mom 

Can you request that a 504 be terminated and a IEP be initiated, if you feel that a 504 is not the appropriate measure? I don’t won’t to seem too pushy, causing the teachers to be biased towards my student.

7:14
Get pushy! Many school districts will try to give a 504 rather than an IEP because they know that it will likely be less burdensome to perform…..there is no dishonor in an IEP…..which often is exactly what the student needs (understanding that many children do just fine with “only” a 504 plan)
7:15
Comment From Meg 

What can I do if my child’s IEP is not being followed?

7:16
School districts hate having to assemble lots of teachers and administrators for an IEP….if they are not following the IEP, the “cost” is that you will demand a further meeting…eventually, most districts will ensure basic compliance rather than have to deal with your IEP requests
7:16
Comment From Melissa in Michigan 

do you have a web page?

7:16
Yes…..mayerslaw.com
7:17
Comment From Guest 

if my sons IEP has special instructions on transportation; can tthe school district who has now leased out their bussing to a private company refuse the IEP instructions to drop off and pick up curb to curb and make my child wait at a bus stop?

7:18
No….the school district MUST comply with the IEP mandates….and they cannot delegate their legal responsibility for compliance, even if they subcontract with another company
7:18
Comment From Andrew 

My daughter gets speech therapy for 30 mins a day in school and everytime that I ask if we can up the therapy, the response I get is, “30 minutes is enough, any more than that would be too much for her to absorb” How do I get them to at least try increasing her therapy time?

7:19
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 recomendations you can then present to the district
7:19
Comment From Karla 

Do you recommend that we bring a mediator or an attorney to our son’s IEP meeting?

7:20
I think that often, this is NOT a good thing to do unless prior statements by the school district alert you to hostility or closemindedness…..I think parents should first TRY to speak openly without attorney or mediator assistance….
7:22
Comment From melissa 

can you have a 504 and a iep also

7:22
You can technically wear a belt and suspenders too but one of them is not needed
7:23
Comment From Brittnii 

ED kids, what can i do to help so my child isnt teased?

7:24
Bullying has now become a huge issue for school districts, who are beginning to implement zero tolerance policies. More importantly, we just got a federal court decision this year that confirms that bullying is a big violation under IDEA
7:24
Comment From Guest 

Any suggestions to keep the IEP process collaborative rther than confrontational? My daughter sometimes feels overwhelmed by the “experts.”

7:26
This may sound silly, but many parents quiet the waters from the outset by bringing in cookies or something else to the meeting. It is difficult to disagree without becoming disagreeable. Peoples egos often get in the way. I also think that if you present an expert report, the dynamic changes from “this is what the parents want” to “this is what an expert is recommending”
7:26
Comment From Erika 

My daughter is starting middleschool and has inclass support mainstream, i also am wondering if theres any advice on her bullys, how to prepare teens for staying away from peer pressured things when there so volnerable, is there a book or any advice you can give us on tackling this cause this worrys me.

7:27
There is a link on my website, mayerslaw.com, to this year’s landmark bullying decision, which offers a lot of guidance as to what parents and school districts should do
7:28
Comment From Shell 

I have the same issue with ‘budget cuts’. My son has lost an excellent autism teacher and I am afraid that he will lose the 1 on 1 that he used to get. Should I address my concerns to the school or go straight to BOE w/ other parents? Thx

7:29
I would address it initially with the school and telegraph that such a move would not be acceptable and that if that were to occur, you would take action. You might well get a reassurance, as the squeaky wheel often gets the grease
7:29
Comment From Leslie G 

Children in NYS Early Intervention despite their diagnoses are receiving service authorizations that are ridiculous and similar eg. 1X60 every other week or 1X30 every other week. The service authorizations are not individualized. What can families do collectively to fight this?

7:30
Under Early Intervention, which goes only to age 3, a parent may get a lot of mileage going straight to mediation……
7:30
Comment From guest 

do kids with autism get their ears pierced????

7:31
I don;t have a clue. My daughters are the experts in our house about ear piercing
7:31
Comment From Katy 

What can you do if you do not want a particular staff member working with your child? (if you have only one example to demonstrate this person’s poor ability to adequately work with your child and you just have a “gut” feeling)

7:32
This is the weakest leg, often, that parents have to stand on. Personnel decisions are very much left up to the school district unless you can show true incompetence or worse conduct……
7:32
Comment From Guest 

Who is legally required to be at an IEP meeting?

7:34
This will differ slightly from state to state, but usually there is at least a district rep, a special education teacher, and evaluators, and if your child is attending or is being considered for regular education participation, a regular education teacher
7:34
Comment From Guest 

Good evening Mr. Mayerson. Wanted to stop im just to applaud everything your firm does to promote and protect autistic children. We have moved our 11 year old from public school to a private school that deals exclusively with autistic children through the age of 22. And thanks to the McKay scholarship, it’s free. We were so afraid of him being bullied in middle school.

7:35
Thank you for your kind words……and I am glad that your child is now in a good place
7:36
Comment From Guest 

If I’m not agree with an IEP meeting decision about related services, should I sign any paperwork?

7:36
You always should sign the “attendance” page of an IEP, but if you are not in agreement about related services, you should so indicate and communicate…..otherwise, the inadequate service levels will commence…
7:37
Comment From Mia 

When are services required to start under an IEP? I assume on the date the IEP states (the first day of school), but our district always takes a few weeks to get the schedule done and it can take 2-3 weeks until services actually begin. What can a parent do?

7:37
Each IEP is required to specifiy the start date and end date….to give parents notice of how to plan
7:38
Mia…you should write to the district and request the schedule weeks before the start of school….and I know that I just gave you impractical advice considering the time of year!
7:39
Comment From MB 

How can you address behavioral issues in an IEP? My son is currently screaming and yelling which I feel is his current way of stemming, but the teacher feels it isn’t related to Autism?

7:40
I am going to stick my neck out, but your child would appear to require a Functional Behavior Assessment to determine the function of his behavior(s). This should not be the subject of conjecture or guesswork
7:41
Comment From keli 

what is a Functional Behavior Assessment?

7:42
An FBA identifies the target behaviors, tracks and measures the frequency, duration and antecedents of those behaviors, and then, finally, hypothesizes as to the likely function of the target behaviors…and you need to know wjhat the function is before you can develop and design a proper behavior intervention plan
7:43
Comment From Maria 

Is it possible on IEP meeting to request bilingual paraprofessional or ESL services for autistic kid?

7:43
Maria……seguro!
7:44
Seriously, it is not only possible, but often required….depending on the unique needs of the student.
7:44
Comment From Melissa 

Thid is my 3rd time writing this but its not going through I assume. I have a problem with my sons teacher. He is 4 and has Autism. She would only speak with me if he had a problem at school. She feels that he needs a behaviorlist which we do not have in our area that knows how to work with Autistic children. What should I do?

7:45
Ask the teacher if she feels comfortable shareing that with the district and if so, I would call an IEP and get this problem on the table
7:46
Comment From MJ 

I am a special education teacher and have several children with autism that I serve. I am sad to read about parents not feeling like they are getting adequate services or that their schools look at their children as burdens. Not all schools/districts are this way. We welcome parent input and do the very best we can with the resources available to meet each student’s needs.

7:48
Thank you for the fine work that you do. Dont be sad. Parents cannot move their children forward having a party that celebrates only all the wonderful things. Parents know that they have to move the mountains that are standing in the way of their chilldren’s progress. This is nothing personal….but a reality that all parents face. We have worked with many fine and honorable school districts that will always do the right thing…..but that is the question all parents must ask. “ARe you a good witch or a bad witch.”??
7:49
Comment From Bryce`s Mom 

Going into a IEP meeting is stressful enough but how about when my Son`s Dad brings a girlfriend in with him that has been nothing but hateful toward my son and more than I can say on here but it makes it twice as uncomfortable? …school claims there is nothing they can do? Thank you for any suggestions :}

7:50
I hear you. Unfortunately, either parent has the right to bring anyone they wish to the IEP, unless that person becomes disruptive at the meeting. That often helps parenets who bring advocates, experts, but works less well when your ex brings their baggage.
7:51
Comment From Guest 

How do the rules change for Autistic students starting college? Do colleges have to provide the student with all of the services that they had while in k-12?

7:53
This is a thorny issue but it normally is not an IDEA issue as much as an ADA issue……however, in the last few years, we are seeing many colleges and universities promoting special serrvices supports for students who need extra assistance…..its not the stigma it once was and colleges recognize that 13% of the population will have some form of disability to contend with…..
7:53
Comment From Cate Borzi 

How do I get ABA services in a region of Illinois that is still fighting tooth and nail to avoid schools here providing it?

7:55
Cate……this is less of a problem now, but obviously still of concern. If I can get ABA to come to a remote stretch of Alaska, you have a shot to import it to Illinoise. Check out the T.H. v. Palatine case, from your jurisdiction, that we won in 1998 and which supports ABA programming
7:55
Comment From PB 

Speaking of resources, are there ANY rules, (laws) about case load, number of students and the intensity of each student’s needs?

7:56
The IEP ratio limits the number of students, and some professional organizations, such as ASHA (for speech pathologists) publish caseload limits….
7:56
Comment From Lisa 

My daughter is 5. Does a school district always offer the bare minimum that is doesn’t remotely address the child’s needs to learn but just warehouses them in a large class with no support? It seems that is all they are willing to do and when I object, they say the environment is “least restrictive” because it is the closest Special needs primary class to our home.

7:58
It’s not even the “bare minimum” if the services are inadequate to create meaningful progress. The problem is assessing whether your daughter is meaningfull progressing or not.
7:58
Comment From Imelda Donato 

I moved to a different school district while my son’s old IEP was in place. The new district has decrease speech services by 50% and when I told them what was needed according to the IEP, I was told that “that” document is no longer legal. What can I do?

7:59
If you moved to another district within the same state, you have “stay put” rights to the services in the old IEP that you can invoke by filing for due process, assuming that the move was very recent.
8:01
Comment From Karen 

Can I use meaningful progress in regard to behavior issues or is this relevant only to academic progress?

8:02
It is BOTH, particularly if your child has interfering behaviors that, when occurring, are making your child unavailable for learning.
8:03
I want to thank everyone for throwing me some very interesting questions….questions that come up time and again. I hope that everyone has a great start for the 2011-2012 school year…..good luck!!

Family Services Office Hours – 8/17/11

August 18, 2011 2 comments

Office Hours, a new resource available on the web at www.autismspeaks.org 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 familyservices@autismspeaks.org.

Here is the transcript:

12:59
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.
1:02
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?
1:20
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.

1:20
Hi there! Those are some great suggestions. How did it work out?
1:21
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!
1:22
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?

1:23
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
1:23
Please feel free to download all of our Tool Kits! They are FREE!
1:23
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
1:24
Portfolios can include artwork, writing, and other school related samples
1:25
This is also a great way to have a record of your child’s school life.
1:26
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?

1:28
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
1:28
Remember every plan can be adjusted based on your child’s needs!
1:29
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?

1:30
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.
1:30
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!
1:31
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?

1:34
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.
1:35
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’
1:35
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?

1:36
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.
1:37
There is a more specific section that you may find especially helpful, ‘Asperger Syndrome/HFA and the Classroom.’
1:37
You can order the kit by calling us at 888-AUTISM 2 (288-4762) or email us at familyservices@autismspeaks.org.
1:39
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
1:39
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?

1:40
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.
1:41
We would also want to recommend the Transition Tool Kit that you can order or download for FREE!http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
1:41
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!

1:42
That is great! We are so glad that we were able to help and PLEASE keep us posted!
1:43
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
1:44
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…

1:45
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.
1:46
I recommend you provide your school with a copy of IDEA.http://idea.ed.gov/
1:46
You have to know your child rights. Your special needs child has the right to a free and appropriate education.http://www.autismspeaks.org/what-autism/your-childs-rights
1:47
Tonight Gary Mayerson will be on for a LIVE Q & A to discuss ‘How To Compromise With Your School District Without Compromising Your Child’
1:47
Please feel free to join us at 7pm EDT TONIGHT!http://www.facebook.com/autismspeaks?sk=app_232959576748556
1:48
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?

1:49
Hi Jenny, thanks so much for your question. Please visit our School Community Tool Kit Appendix that contains many forms and other resources.http://www.autismspeaks.org/sites/default/files/sctk_appendix.pdf
1:49
Paula Kluth is also a wonderful resource. She has samples of personal portfolios that you may choose to model your child’s after
1:50
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
1:51
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?

1:52
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. http://www.autismspeaks.org/what-autism/learn-signs
1:54
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?

1:55
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
1:56
Autism Speaks is involved with autism advocacy efforts for military families as well. Please visit Autism Votes for more information.http://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm
1:57
‘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.
1:57
We were lucky enough to have her blog for us!http://blog.autismspeaks.org/2011/07/21/itow-meeting-my-baby-girl/
1:58
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?

1:58
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. http://www.wrightslaw.com/info/dod.index.htm
2:00
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’
2:00
We will see you next week! Remember to stay positive and have a great school year! Keep us posted on your progress!
2:01
As always you can call us at 888-AUTISM 2 (288-4762) or email us at familyservices@autismspeaks.org.

IEPs, iPads and Bullies: 10 Tips From a Dad Who’s Been There

August 16, 2011 25 comments

James Vaughan’s 11-year old son, Kian, is entering the 6th grade in the Weber County public schools in Utah.  Kian, who has high functioning autism, has been mainstreamed in public school since the second grade and has made great strides.  James attributes the progress to the successful partnership he and his wife have cultivated with the folks at Kian’s school.  James is one of many parents sharing his story, tips and team on MyAutismTeam.  We recently spoke with him to learn how he has partnered with his public school to create a positive and safe learning environment for Kian.   Here are 10 tips we gleaned from speaking with James.   Hopefully some of them will help you.  You can post questions and comments directly to James’ wall by clicking  here .

Please join the Family Services, LIVE Facebook Q & A, ‘How To Compromise With Your School District Without Compromising Your Child’ with Gary Mayerson, Wednesday August 16 at 7pm EDT.

(10) Get the Official Diagnosis As Early As Possible

Dr. Megan Farley of the University of Utah diagnosed Kian.  We didn’t get the official diagnosis until December of last year when he was 10 because we had been worried about saddling him with the label of autism.  In retrospect I would say the right time to get a diagnosis is “as early as possible”.  Having the official diagnosis in hand, along with some written recommendations from the doctor enabled us to secure even more services for Kian including technology assistance [see #9].  When we decided we wanted a diagnosis we had to be very persistent with our pediatrician to get a referral.  He kept assuring us that Kian would outgrow some of his developmental challenges, but in the end agreed to give us the referral when we were persistent.

(9) Be Firm, But Flexible

My wife and I always make sure that every concern we have about Kian is thoroughly understood by our partners at the school, particularly during the IEP process.  Talking about his speech delays got us speech therapy.  Talking about his challenges interacting with other kids led to social skills therapy, and so on.  It’s important to make sure they understand and address each issue.  I’m the kind of person that doesn’t take “No” for an answer, but you have to be flexible.  There have been times we’ve requested something for Kian that the school hasn’t been able to accommodate.  But rather than saying “No” they’ve always said, “I don’t know if we can do that, but here are other options we can do.”

(8) Communicate Frequently All Year, Even After the IEP  

The open communications continues after the IEP, otherwise it’s not a real partnership.  We regularly check in with Kian’s teachers and aide to make sure we are helping each other.  We also keep the focus of the communication on Kian’s development. We let them know things we are trying at home that are working, and notify them of any changes that could impact Kian’s performance in school that day.  We’ll say, ” You may see some distraction today – here’s why… .”  That helps them understand how to interact with him.  Similarly, we want them to tell us about the challenges they are having with Kian at school so we can then work on those issues at home.   The more we are open with each other on a regular basis, the better the job we do meeting Kian’s needs.  It keeps everyone focused on the goal of his development.

(7) Speech Therapy, Social Skills and 1-on-1 Aides

Before the second grade, Kian was in the school’s alternative kindergarten and first grade program.  There, he had a strong speech program and one-on-one time.  He flourished.  Now, in the mainstream curriculum, he has an aide and is pulled out of class for 30 minutes each day for either speech therapy or social skills integration. That one-on-one time has been critical, and the special attention from the aide makes it easier to accommodate Kian in the classroom.

(6) Ask If Your Child Can be Tested Differently

When the teacher stood up in front of the class and read off questions for the students to answer in writing, Kian couldn’t really respond to this normal classroom testing, but it was not due to a lack of understanding of the material.  When we asked, “Can Kian be tested differently?” the school was happy to do so.   He now gets tested on computer where he can type his answers — something he can do quite well.

(5) Seek Out Alternatives for Stressful Situations

Going out to recess was more traumatic than fun for Kian.  If that is the case for your child, ask if there alternatives.  We asked and Kian was able to stay in the classroom during recess so he could read or do some other type of project.

(4) Get Involved If You See Bullying & Teasing 

It’s not surprising that a child struggling with social interaction will get teased and sometimes bullied, but it’s certainly not acceptable.  If you see it,  GET INVOLVED IMMEDIATELY.  My wife is a spunky lady.  When she sees bullying going on she makes sure that the students and parents involved know about it and are educated about it.  But she does it in an understanding way.  She explains how kids are different from each other.  We’ve increased awareness about bullying at the PTA.  PTA is a great thing.  You’re mingling with other parents and making them aware of the issues.  When other parents become aware of the issue, they then talk to other parents, who in turn, talk to their kids.  We’ve received phone calls out of the blue from other parents saying, “I learned about the teasing my child was involved with.  You won’t have a problem with that again.”

(3) Start With The Goal of Building a Real Partnership

One of our goals from the outset was to form a strong, open partnership with the people at the school, from the Principal to the teachers and aides, to the Special Education Director.  Kian’s challenges were a lot bigger than we could handle on our own.   We let them know how much we’d appreciate their help looking out for Kian and making sure his needs were met.   We committed to be totally transparent and open with them and to help reinforce the right behaviors at home.
We certainly didn’t want our son to be a distraction to the teachers and other students, but we also wanted to make sure he had everything he needed to develop and grow.   The principal of our school recently told me why they’ve always been so open to finding solutions for Kian saying, “You cared, you really showed it was about forming a partnership with us, and you were always up front about the issues before they became a situation.”

(2) Reduce Homework and Leverage Technology
After spending a day with Kian, Dr. Farley immediately suggested a reduced homework load for Kian and suggested we use a computer or other technology to help him type his homework.  20 minutes of normal homework was taking him 1-2 hours to do (partly due to challenges with handwriting). Our school district had a special foundation that was able to provide Kian with an iPAD.  He uses the ipad to keep a calendar of his assignments and to type out his work rather than writing everything out by hand.  He also receives a reduced amount of homework.  Again, this is setting him up to be more successful each day rather than falling behind.

(1)  Reach Out to Other Parents

In the autism community, the biggest contributor to hopelessness is not knowing who to talk to and where to go for advice.   I like what MyAutismTeam is doing because they make it easy to connect with other parents near me and see which providers they recommend and what kinds of activities they are doing.  It’s a great tool to get those relationships started and then be able to expand on them.  My wife and I started a program in Utah called FAAST (Families of Autism and Asperger’s Standing Together) that meets monthly.  I posted an upcoming meeting on my wall on MyAutismTeam the other week and ended up meeting another parent that way.

- Interview Conducted by Eric Peacock, GM of MyAutismTeam 

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