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How to Prepare for an Autism Emergency LIVE Q & A

November 14, 2011 4 comments

Please join us for a live chat, on Nov 15th at 4-5 pm EST Dennis Debbaudt, of  www.autismriskmanagement.com, will present “How to Prepare for an Autism Emergency.”

Dennis Debbaudt is the proud father of Brad, a young man who has autism. In the 1980′s,
Dennis wrote for the Detroit News and worked with network television current affairs
programs in the U.S., Canada and United Kingdom. A professional investigator and journalist
since 1977, Dennis turned his attention to autism spectrum conditions in 1987 after his son
was diagnosed with autism. His first report Avoiding Unfortunate Situations was published in
1994. He’s since authored over 30 articles, books and chapters including Autism, Advocates
and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with
Autism Spectrum Disorders for Jessica Kingsley Publishers, London UK (2002), Contact with
Individuals with Autism: Effective Resolutions for the FBI Law Enforcement Bulletin
(Debbaudt & Rothman, 2001), Patients with Autism and Other High Risks for the Journal of
Healthcare Protection Management (2009) and Autism in the Criminal Justice System (Taylor,
Mesibov & Debbaudt, 2009).

JOIN CHAT HERE!

No Ribbon for Alexa

November 10, 2011 17 comments

By Paula Scheider 

The Eagle Globe and Anchor, the familiar yellow ribbon…The autism awareness emblem: the iconic blue puzzle piece.

Take a look at my fridge, my wardrobe, our home and you will see these reminders everywhere. Perhaps it is a remnant of my Catholic upbringing but I tend to surround myself with symbols of what is dear to me. I need no reminder that my son Jay is a Marine or that my daughter Fiona has autism but I do need to be reminded at times that we are all part of a larger community who shares my experience. One thing I have learned in my extensive autism education this year is that I am classically NT (neuro-typical)- I need to belong to society.

My daughter Alexa understands this. No surprise, considering that Alexa at 11 years old is one of the most empathetic human beings God created. Empathetic, considerate, open-hearted, giving … and astute.

Witness her observation as she stood in front of the fridge and inventoried the various magnets:

There’s no ribbon for me.

This was said without a shred of self-pity or anger. No jealousy or assigning of guilt. It was as matter of fact as if she had just announced we were out of milk.

There’s no ribbon for me.

I immediately pointed out that the majority of the artwork was in fact, hers and she shrugged. “I know,” was all she said.

“And look how many pictures of you we have,” I stumbled on.

“Mom, I know,” Alexa smiled. “I know you love me and all that. I just noticed there’s no ribbon for kids like me, that’s all.” And the subject was dropped and she went on with her life.

It haunted me for days. Kids like me … are there ribbons for gifted kids? Children with special needs siblings? Middle siblings? Children who handle divorce and multiple households? Finally, I asked her.

“It’s no big deal, Mom” was her answer.
“Really?”
“Yes, really.” Alexa shrugged. “I only mentioned it because I noticed it. It’s not a big thing to me.”

And while I believed her, it was a big deal to me. Ever since Fiona’s diagnosis and Jay’s deployment, I had been conscious of Alexa’s feelings. Here she was, with a hero big brother and a baby sister with autism and I didn’t want her to get lost in the shuffle. Add to that her family dynamic at her father’s home, where she is the big sister to two darling – and new – little brothers. Her bonus mother and I had discussed it and together we worked to make sure that Alexa felt loved and important and unique. Both her father and Eric make special time for her and treat her like a princess. At school, her only transgression seems to be talking too much and trying to take care of everyone. In my heart, I know Alexa is secure and I am grateful.

But this ribbon thing nagged at me. It wasn’t that Alexa felt neglected or unimportant – it was that there was no symbol of her. No symbol of the selflessness she displays. No symbol of the joy she inspires in all of us, no symbol of her frustrations and fears and anger. At a glance, our family appears to have two heroic children when in fact, there are three. And that made me think – there must be so many “kids like me” out there, kids who live with and love a child with special needs, kids who have to worry about a faraway war, kids who feel confused and left out at times and guilty for being normal. Kids who need to love others almost as much as they need to be loved. Kids who love and resent having siblings who are different. Kids like my Alexa.

Alexa’s ribbon would have to be pink, for her boundless love. Pink like the flowers, like the lip gloss she can’t live without, pink like her cheeks after a giggling fit. Pink because while she is one tough cookie, Alexa is all girl.

And it would be purple, because purple is fun and festive and alive. Purple is for royalty and Alexa is our princess. Purple stands out in a crowd. It would be tie-dyed with all different shades of purple and pink because Alexa is funky and stylish and never takes herself too seriously.

And most of all, there would be glitter, because even in a dark night, Alexa sparkles.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

Family Services Office Hours – 11.10.11

November 10, 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.

2:54
Hey Everyone! We will be on in a few minutes!
2:58
Ok! We are here and happy to start taking questions!
3:00
Comment From Melissa

How much information is available on the possibility of autism being genetic? From parent child?

3:02
Hi Melissa! Alycia Halladay, Ph.D., hosted a LIVE chat dealing with genetics! Here is the transcript!http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
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She was also interviewed on CNN about autism and siblings, which you can see here:http://blog.autismspeaks.org/2011/08/18/siblings-news-coverage/
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In addition, our Chief Science Officer Geri Dawson did a LIVE Chat about the Genetics of Autism. She is great! Here is that transcript: http://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:04
Our science team regularly posts blogs explaining new research findings about autism. Stay connected by checking up with us atblog.autismspeaks.org!
3:04
Comment From Shannon

Is PDD-NOS actually a form of autism?

3:04
Hi Shannon! The answer is yes! Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
3:04
You can learn more about it here!http://www.autismspeaks.org/what-autism/pdd-nos
3:05
Comment From Kathy

Hi! I am the mom of a 10 yr old High functioning son and I am having trouble finding any help since he seems so “normal”. He gets no help in school and limited help through his dr’s. Is there help out there for High functioning Aspy’s?

3:05
Hi Kathy! We have a great Asperger Syndrome/High-Functioning Autism Tool Kit. It is mostly for newly diagnosed families but contains lots of tips and information for all families of children with AS/HFA. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:05
We also have plenty of resources on our website related to helping people with Asperger Syndrome. Here are a few great links:
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Our Resource Library contains tons of great books, magazines, online software, toys, game, apps and much more!www.autismspeaks.org/family-services/resource-library
3:06
Comment From Haley

Hi! I was just wondering where I could get information or if there was someone I could talk to about careers in autism? I am in college right now and I would like to talk to someone who could help me make sure I’m on the right path….

3:07
Hi Haley! That is so great you are interested in a career in autism. If you are looking to provide direct services, I suggest you search our very extensive online Resource Guide. You can click on your state and find service providers in your area in lots of different fields (schools, therapists, after school programs, recreation activities, etc.) Those providers will most likely have lots of information to help point you in the right direction!www.autismspeaks.org/resource-guide
3:08
Comment From Brenda

I have been reading a PDD and ADHD and how some ADHD medicines, actually help with the PDD. Is there any information you can share on this?

3:08
Many families of children with autism spectrum disorder (ASD) are faced with the option of using medicines to help treat their child’s challenging behaviors. This is a tough medical decision and there is no one right answer.
3:09
Comment From Shannon

I have read the forum in autism speaks and it is great. I just wanted to make sure that when I say my son has autism that I am not exaggerating. It sure feels like it!!

3:09
Shannon, we also have a great Learn the Signs campaign and an Autism Video Glossary that contains lots of videos that show symptoms of autism, compared to neurotypical children. They have been really helpful to so many people.
3:11
Comment From Jane

My son’s father and I are divorced and his father would like me to have him and his nt brother for extended time (for respite) however I don’t have the home which can accommodate his needs. He’s registered with DDD but they are unable to help. Are there any other resources for me to look into?

3:13
Hi Jane – that sounds like a very tough situation you are in. Your ex-husband needs to stick with the rules of the court. You can search our Resource Guide by your state to find a lawyer in your area as well as respite care options.http://www.autismspeaks.org/resource-guide
3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time.We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:13
Comment From Shelly

I have a three year old with PDD-NOS. I am having a hard time trying to educate my parents (his grandparents) on the subject. They are still in denial and I have even given them the tool kit for grandparents. They refuse to even look at it. They do not even want to make changes in the way they act arond my son (which makes him digress after every one of their visits.) What more can I do?

3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time. We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:14
Perhaps you want to speak to one of your parents who may be more willing to listen. It is important to stress that a family’s understanding and willingness to help their loved one with autism is crucial to the child’s progression and happiness.
3:15
Comment From elizabeth

I have a non verbal 2 1/2 year old that was just diagnosed with severe autism. where can i get PECS cards that are not going to banrupt me?

3:15
Hi Elizabeth! Have you tried our 100 Day Kit? It is a guide specifically created for families of children recently diagnosed with autism. You can read it here: www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:16
I suggest you call our Autism Response Team at 888-AUTISM2. They can take your information and place your order. It is FREE!
3:17
I also suggest you search our Resource Library for tools like PECS cards. One of our categories is for visual tools that have been helpful to families in our community:http://www.autismspeaks.org/family-services/resource-library/visual-tools
3:18
Comment From Sarah

My “step son” (he is legally my son but not biologically) is Autistic. How likely is it my husband and I will have a child who is Autistic? I know that it affects about 1 in 110 children, 1 in 70 boys, but is it more likely since my husband already had one.

3:19
Hi Sarah! We have a few chat transcripts that you may find helpful. Here is the ‘Genetics of Autism: What It Means for You’ hosted by Geri Dawson, PhD, and Steve Scherer, PhDhttp://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
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Recently the High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized. Here is more information! http://blog.autismspeaks.org/2011/08/30/the-babysibs-consortium-important-findings-ahead/
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Comment From Maria

Do you know what therapies can help with behavior problems?

3:20
Hi Maria. We have a list of treatment options on our website in the What is Autism page. These are all treatments with documented science research behind them. In the left column of the page you will see a long list. You can click each of them to learn more about what that treatment involves.http://www.autismspeaks.org/what-autism/treatment. Our Resource Guide lists lots of therapists who specialize in these treatments www.autismspeaks.org/resource-guide. It is important to remember that because every individual with autism is different, not everyone responds well to the same treatments. Be sure to research before you decide what you feel is best for your child. There are lots of helpful tools out there!
3:20
Comment From Sarah

Elizabeth, with our son we found a lot of websites that had picture and stuff. We put them around the house and our son picked up on some of the things and now even says some of those words.

3:21
Thanks so much for adding your insights! We love seeing the community help each other out!
3:21
Comment From Rebecca

My son is 3 and is somewhat verbal. He will ask for things at home but at school he doesn’t ask for things unless he sees the object/thing he wants. It is because of this and his lack of spontaneous language(at school) that they are suggesting we use PECS. We had stated at his IEP that we didn’t want him using this. Our concern is that he would become dependent on this. What is your opinion of PECS? Is it beneficial?

3:22
Hi Rebecca! It is important that your IEP team listens to your needs and what you feel is best for your son. We have recently released an IEP Guide that will help you ensure your son’s needs are being met. You know what is best for him, so it is important that you make sure the school and the IEP team are hearing you loud and clear!
3:23
Here is a book about PECS that was submitted to our Resource Library by a family who found it helpful:http://woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-015-5_A_.asp
3:24
Comment From elizabeth

thanks! I did order the booklet yesterday. thanks for the links and also your input, Sarah

3:24
Comment From Sarah

Rebecca, I am not an expert by any means but I do have an autistic son as well. Stick with your gut feelings. Make sure the IEP is following what you want! The schools sometimes try to do what THEY want and what’s easiest for them and they can’t! If you end up wanting to use the PECS later, you can then add it to his IEP. You know your child best!

3:29
Comment From Rebecca

Our wishes and concerns have not been heard . At the first IEP the school district told us that all they wee willing to ouffer our son was a place in their Autism preschool program. Eventhough the “school” where he had been presented a report saying that their team thought that it would be in his best interest to continue with his home therapy program. Where can we find Educational Advocates in our area that would help us free of charge. We are in Modesto, California.

3:29
Hi Rebecca. It is important to make sure your concerns are being heard. You are entitled to have your voice heard in all matters related to the IEP. Our Resource Guide contains a list of advocates from across the country. You can search the resource guide at www.autismspeaks.org/resource-guide
3:30
We don’t list them by fee but hopefully they will be able to help you. In addition, you might also want tos earch our Local Autism Organizations category. Those organizations may be better able to point you in the right direction in terms of an educational advocate.
3:31
Comment From Sarah

google advocates in your area. I know here in GA there are not any in our city, but nearby towns.

3:31
Comment From Rebecca

Thank you Sarah

3:38
Comment From Guest

My son’s teacher communicates via email with us (parents). That’s fine, however, the emails are sent to the stepmother at her work’s email address rather than to my son’s father. I’m concerned for my son’s privacy. The school’s position is that they send emails to whatever address is provided. Are there any laws which can protect information regarding my son in this particular situation? SPAN was unable to find any

3:39
Hi Guest, have you tried changing the contact email that your school has listed?
3:40
That seems strange that the only one they send to is your son’s stepmother’s work email. You should make sure to have your email listed on there too, as all parents need to be involved in these decisions.
3:47
Comment From Guest

I don’t know how to explain to kids at the park that my son has autism and i live in NYC do you have any suggestions.

3:48
Hi Guest. Disclosing your child’s autism diagnosis to other people can be tough sometimes. We have a great list of stories on our website for peers that help them to understand more about their friends or playmates who have autism.http://www.autismspeaks.org/family-services/resource-library/books#peers
3:49
Perhaps you could show them these fun picture books, or get ideas from the books on how to best share the diagnosis. All of these books have been submitted by families who have found them to be extremely helpful with peers.
3:52
Comment From Sarah

I have also had troubles explaing to other children why my son isnt “normal”. They don’t understand why he doesn’t want to play with them or why he doesn’t talk back. I always say “God made Cody different (like he does everyone) and Cody just doesn’t always like to play or talk to others. It doesn’t mean he doesnt like or love you, it just means he likes to have his own space. He sometimes prefers to play alone instead….

3:53
Thank you Sarah for your helpful responses. We love seeing families in our community helping each other out. Sometimes listening to people who have had similar experiences as your own is extremely helpful and comforting.
3:54
Our Facebook page is a great way to get conversations started with other families in our community.www.facebook.com/autismspeaks
3:56
Comment From Sarah

You’re welcome. Hopeful I can help other parents. I have had wonderful friends with simiar experiences that have helped me!

3:57
Well we’d like to thank everyone for stopping by today! Remember we are here every Wednesday at 3pm EDT and you can reach us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.

Voices of Autism: A brother’s perspective

November 8, 2011 127 comments

This blog post is by Andy Shumaker. His brother Matthew has autism. Andy is a graduate of Yale University.

My brother doesn’t like me very much, and I don’t blame him.

It’s not that I’m a bad person, or that I don’t treat him nicely. It’s not that he’s unfriendly. I think it’s just hard to like someone who’s a lot luckier than you are.

Matthew was born a couple of years before I was, but somewhere along the way I became the older brother. I think I started speaking more than he did early on, not that we cared at the time. But as we grew older, the milestones started to matter.

The driver’s license was a big one. In east bay suburbia, it’s a given that on your 16th birthday you go to the DMV and take the test. It’s all you talk about when you’re a sophomore in high school, and when Matthew was that age, he probably heard about it every day when he walked alone through the halls.

He would talk to my mom about how excited he was to get his license; she would try to disabuse him of this illusory desire as gently as possible. But he was adamant. He wrote his name in Sharpie on my mom’s license plate. One time he got in her car and, instead of backing out of the garage, put it in drive and drove through the wall.

I, the neurotypical one, got my driver’s license on my 16th birthday, when Matthew was 18. According to Matthew, though, I wasn’t allowed to drive. I was younger than he was, so it made no sense for me to have rights that he didn’t.

When I needed to drive somewhere and Matthew was at home, my parents would have to drop me off at the end of our street before walking back home.

Matthew knew what was up, and he would give me a stern warning about the dangers of driving the next day. Whenever he caught me trying to sneak out of the garage, he would run out and scream at me.

Things have changed since then. After he got over the screaming thing, he displaced the driving ban onto Michael, our next-door neighbor who is Matthew’s age. This went on for a few years– when he saw me driving, I would have to roll down the window, and he would tell me that Michael wasn’t allowed to drive, to which I would always agree before going on my way. Today, after seven years, I’m allowed to drive, but not if he’s in the car.

Matthew can drive, if he feels like it. My dad drives him to the parking lot of the church near our house. Then they switch seats, Matthew drives in circles, and my dad’s hand rests on the emergency brake.

But it’s not just about the car. Matthew and I don’t really get along when we’re around the house, and I think it all has to do with jealousy.

I am very lucky.<Matthew knows that I have no trouble making friends, and he knows that I have a girlfriend. He knows that I’m more independent than he is, and that I go to college.

Sometimes I accidentally beat him when we play video games together.

If I enter the room when he’s not in the mood to see me, he comically turns and shields me from his presence, essentially giving me the most literal version of the “cold shoulder” I have ever seen. I’m not allowed to pat him on the back without permission. When he apologizes to me or says something nice to me, it’s usually because my parents have made him do it.

The good news is that things are getting better all the time. The breakthroughs are gratifying.

Our most recent visit to my grandfather’s house in Carmel was a big one.

I got back from the beach a half hour before we were supposed to drive home. Matthew was sulking on Grandpa’s bed, and I asked him what was up.

“I really want to go to the candy shop all by myself but my mother won’t let me,” he said. There is a little shop on Ocean Avenue where Matthew likes to buy jelly beans.

“Well, why don’t we go together?” I ventured.

“I don’t know,” he said hesitantly.

“Come on, let’s go.” I said it forcefully. Matthew sighed.

“OK.”

He must have really wanted those jelly beans.

So we set off down the street toward Ocean Avenue. He even tried out some conversation starters that I hadn’t heard before.

“So, how’s it goin’?” he asked in a rather nuanced, jocular tone.

I told him it was goin’ great. Told him I went swimming in the ocean.

“It must have been cold!” he said.

After our first few exchanges, the trip to the candy shop was pretty quiet. Matthew likes to think when he walks. I like to think that he was thinking, among other things, about jelly beans, and about how his younger brother isn’t so bad after all.

The trip to the candy shop was a good breakthrough, and when you have a less-than-satisfactory relationship with your autistic older brother, you take what you can get. I think it will keep getting better as we grow older, and I hope his jealousy will fade in some ways.

Like I said, I don’t blame him if he doesn’t like me. It’s hard to like someone who’s a lot luckier than you are.

I just hope that some day, he realizes that one of the luckiest things that happened to me was him.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

What About the Siblings? – 6 Tips from Siblings of People with Autism

November 7, 2011 15 comments

This is a blog post by Eric Peacock of MyAutismTeam.

This past Sunday morning I was in Seattle at the US Autism &  Asperger Association Conferenceand fortunate enough to catch a panel on “Siblings of People with Autism.”  The Panel had five young, neuro-typical men and women ranging in age from 14 to 27, each of whom have siblings on the autism spectrum.  I was impressed by the poise, sense of humor, courage and wisdom of this panel and just wanted to pass on a few pointers for parent that I took away from the panel.Open up a channel of communication with your neuro-typical child – All 5 panelists understand that their parents need to spend more time with their sibling on the spectrum, and don’t really seem to resent that fact.  They just want to occasionally be asked how they feel about all of it.  And it’s not really a time for you to talk.  “Don’t feel you have to lecture or provider more answers…just listen.”   Just asking about it let’s the child know it’s ok for them to talk and even voice complaints about their situation or feelings.

  • Talk about bullying – It’s a typical sibling instinct (for both girls and boys) to jump into the thick of things to defend their sibling on the spectrum from bullying.   So they’ll do it, but often it’s a scary or uncomfortable feeling.   Sometimes just a word from you like, “If you see your brother being bullied at school, find a teacher and tell them about it” – will remind them they don’t have to take on all that responsibility by themselves.  At a minimum, they may pause to notify someone to get help before they step in.  For other tips on how to proactively prevent bullying please check out “IEPs, IPads and Bullies – 10 Tips from a Dad Who Has Been There
  • Start planning early- for when your child on the spectrum becomes an adult, AND for when you are no longer able to watch over him.  There were several talks on this topic over the weekend at the conference.  In a country where most Americans haven’t properly prepared for their own retirements, let alone that of a special-needs child, this is a daunting topic .   As your neuro-typical kids become young adults they’ll start to think and worry about this, and be prepared to talk about it.   One woman on the panel already knows that she would be her brother’s legal guardian should anything happened to her parents.  Others weren’t sure what kind of plan was in place.    The comment that took the cake (and brought tears to my eyes) was when the 14-year old girl on the panel said, “Well, I’m still a little young to be thinking about what will happen when my parents die, but I’ll take care of my brother.”
  • Preparing their friends – As kids, and young adults, most panelists became accustomed to giving an “Autism 101” talk to their friends before they first meet a sibling on the spectrum – just to let them know what to expect.    One woman told a hysterical story about her little brother Mikey who went through a phase when he was younger.  I paraphrase, “Mikey was really into rain boots……  Just rain boots.  One time I had my first boyfriend over the house and Mikey walked in wearing nothing but his rain boots.”   – On a more serious and actionable note, many parents are now going into their kid’s first-grade classrooms to explain autism, so that kids (and their teachers) get a better understanding of this early on in life.
  • The “R” word – Related to the above, one word that really can be upsetting to people is any derogatory / casual use of the word “retarded”.  They often have to explain to their friends why that is upsetting.
  • “Pockets of normalcy” – At some point your kids may seek “pockets of normalcy” – times when they can experience life as though they didn’t have a sibling on the spectrum.   This may lead them – when they are old enough – to spend more time at their friend’s house than at yours.  “Our house was always a mess and crazy.  I spent most of high school at friend’s houses.”
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

Family Services Office Hours – 11.03.11

November 3, 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.

Welcome to Office Hours! Thank you for joining us today. The Family Services team is here ready to answer your questions!
2:58
Comment From Francene

My son was recently diagnosed with Aspergers. How can I get him help and help our family cope, too? I feel like I have no one to talk to.

2:59
Hi Francene! Have you checked out our Asperger Syndrome/High-Functioning Autism Tool Kit? It is a free kit designed to help families understand more and cope after the diagnosis. It will help walk you through the steps following the diagnosis. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:00
You can order a personalized copy for free by calling our Autism Response Team at 888-AUTISM2.
3:00
We have tons of other helpful resources on the Family Services page of our website! www.autismspeaks.org/family-services
3:03
Comment From bernice

High functioning 8 yr old son os being physically abudive towards me and no one else…i am the one with him the most. Any advise or resources. Thanks

3:03
HI Bernice I am sorry to hear about your situation with your son. I would suggest you have him evaluated by a professional who understand Aspergers Syndrome. The ATN has developed a resource called the Medication decision Aid Tool Kit that may be helpful.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:03
Comment From Lisa Gallegos

I was wondering if you have any homeless supportive services? We are being forced out of our home and have 18 days to come up with deposit money for the new place, but we have no where else to turn if we don’t get that money.

3:04
Hi Lisa. I’m sorry to hear about your situation. We have an Autism Cares grant program that helps families experiencing crises such as yours: http://www.autismcares.org/
3:04
We also have a page on our website for Families in Need:http://www.autismspeaks.org/family-services/resource-library/families-need
3:05
AutismCares Provides Grants for Individuals with Autism Spectrum Disorders During Times of Crisis or Unplanned Hardships. It is for families who have experienced a catastrophic life event in the past 90 days such as loss of a home, a job, death in the family, natural disaster, etc.
3:06
Hi Melissa, thanks for your question. Its very important that you work with your Pediatrician or other medical professional; a Developmental Predication or a Neurologist, so they can be informed and active members of your team.
3:06
Comment From Melissa

My daughter will be 3 in December and recieved an educational diagnosis of Autism in July. How important is a medical diagnosis at this time? She has increased behaviors when in strange situations so unless it would be extremely beneficial I would like to avoid situations that cause her extreme stress.

3:06
hi Melissa- sorry I answered your question before I published it.
3:08
Melissa- there is a great book I would recommend by Dr Ricki Robinson called Autism Solutions: How to create a healthy and meaningful Life for your child with
3:09
Comment From jennifer

I have two sons that have both just been diagnosised with ASD. Where can i find a book or something to give to the grandparents to help them understand what this is?

3:09
Hi Jennifer! We recently released a Grandparent Support Tool Kit called A Grandparent’s Guide to Autism.http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism2.pdf. We also recently did a Community Connections piece celebrating Grandparents.http://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents.
3:10
We come out with a Community Connections newsletter once a month that covers important topics for families. Sign up here!http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.5766483/k.3E56/Community_Connections_Sign_Up/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=5766483&en=deJCIJNpEcLEKKNuE9KAKPMzGhIIJPNmG6KMK2PEJsE
3:12
Comment From jennifer

My ot was talking to me about insurance for kids with ASD. do you know anything about this?

3:13
Hi Jennifer. Advocacy for insurance coverage for autism services is a huge part of the Autism Speaks mission. 29 states have mandated autism insurance coverage in recent years. Visit our advocacy page www.autismvotes.org for information about insurance in your state.
3:13
We also plan to release an Advocacy Tool Kit in the next month or so, so keep your eyes out for that!
3:13
Comment From Eva

any advice for a three year old who will not go to sleep at a good hour at night?

3:14
HI Eva
http://www.autismspeaks.org/family-services/health-and-wellness/sleep
Family services just recently published information on Autism and Sleep Disorders.
3:15
In addition, the Autism Treatment Network has published information on Sleep disorders and Autism.The link to their page is below.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network
3:23
Comment From Guest

What do you do when you have 2 kids dx with ASD and live in a state covered under the mandate but our insurance has a $15000 deductible with $80 copays and ineligible for medicaid and cms bc of income. EI is scaping bottom of barrell to give services… what other options are there bc we are underinsured to get supplemental services for my babies?

3:23
Hi Guest – I suggest you check our our Familes In Need page in our Resource Library http://www.autismspeaks.org/family-services/resource-library/families-need
3:25
Early Intervention services “should ” be based on the child’s needs for services.
I would recommend getting assessments to help define your children’s needs.
3:25
You may also want to visit our Resource Guide and look up state information, or contact other Local Autism Organizations who may be better able to point you in the right direction in your state.www.autismspeaks.org/resource-guide
3:26
There is a state information category for EI age, Preschool Age, School age and Adults.
3:32
Comment From Guest

Florida has the most pathetic early intervention program and its reprehensible that they can even call themselves early intervention. I have had to pay out of pocket for independent evals and still receive minimal services (1hr per wk of a primary service provider) and 1hr every 6mon of face to face with secondary “consulting” provider. Its a joke.

3:34
hello- I’ve heard stories about many states who offer the minimum interventions. Have you tried working with an advocate. I realize they can be expensive, but sometimes it can make a huge difference in accessing more services.
3:34
You can find advocates in our Resource Guide atwww.autismspeaks.org/resource-guide.
3:35
I would also recommend a wonderful book called, The Everyday Advocate by Areva Martin.
3:36
You may also want to read our Community Connections on Advocacy at http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference
3:36
A law firm put together a great guide to legal information for families of children with autism, which you can see at that site as well.
3:38
Comment From Guest

I have contacted the state office in tallahasse all ready. My kids passed their BDI-2 assessment with flying colors and they refused to give diff eval. They are only giving services bc of their dx

3:38
Sounds like you are doing a great job of advocating! Keep up the good work.
3:40
I would also encourage you to sign -up for autismvotes eNewsletter. Our government relations team works with state and federal officials on increasing services for individuals with autism.
http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
3:45
Our next Community Connections will be published on November17th, focusing on Safety and Autism, we will launch updates to the Autism Safety project WebPages and offer a new Safety in the Home Workbook and Video, this very practical resource was developed for families by Ohio State University faculty and funded by a Family Serves Community Grants.
http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.5766483/k.3E56/Community_Connections_Sign_Up/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=5766483&en=lgIJKONAJbLEKUNBI9IHLZMILjIMLVOuH8JQI8PMLuEWe will continue the theme of safety in our topic of the week discussions giving families the opportunity to share their successes stories with the community.
http://blog.autismspeaks.org/2011/11/01/totw-traffic-safety/In addition, we have 2 LIVE chats scheduled this month, one with expert Dennis Debault on How to Prepare for an Autism Emergency and the other with George Braddock who will chat about his work on Home Safety. We will promote both these live chats on Facebook, as we get closer to scheduled dates
3:48
Family Services completed the launch of the Family Support Tool Kits – targeted for the parents, siblings, grandparents, and friends of the child with autism.
www.autismspeaks.org/family-services/family-support-tool-kits
3:54
Comment From Guest

Joined on autismvotes on fb a couple mos ago. Will check out newsletter as well

3:54
Thank you all for joining us today! As always, feel free to call our Autism Response Team at 888-AUTISM2 or email us atfamilyservices@autismspeaks.org with any other questions you may have.
3:54
See you back here next week!!

Family Services Office Hours – 10.26.11

October 27, 2011 5 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.

2:52
Hello: We are about to begin Family Services “Office Hours”, you can ask Family Services staff questions about resources or other questions about autism.
2:55
Comment From charleen

what types of resources for low income families are in the phoenix area?

2:56
Hi Charleen! Thank you for joining us today! We have a long list of resources in the Autism Speaks online Resource Guide. You can search for all different kinds of services in the Phoenix area.www.autismspeaks.org/resource-guide
2:56
You may want to contact local autism organizations, a category in our guide and see what they are aware of.
2:56
You also may want to check in with your Department of Developmental Disabilities to see if your family is eligible for Medicaid waivers.
2:57
Here is a link to the Division of Developmental Disabilities site in Arizona: https://www.azdes.gov/main.aspx?menu=96&id=2454
2:57
Comment From Maria Perez

Hello my son is 7 years old he was diagnosed with autism at 2 1/2 years old he does not speak but just some words but he does repeat alot of movies or cartoons he likes how can I get him to start talking more o saying what he needs o wants is there any programs o softwares that can teach him how to talk more and also how can I get him to stop repeating so much of what he sees thank you so much

3:00
Hi Maria thanks for joining us today. I would recommend that you get a Speech and Language evaluation through your son’s school district or a private evaluations.In order to know what your son’s speech and language needs are, its important to have data and information about his needs.
3:00
Comment From charleen

thank you, i’ve being trying to find something for my son, i’ve even asked his behavioral health palce, but they aren’t much help

3:00
Comment From charleen

thank you for all your help

3:00
Comment From Lisa

I just moved to Texas and I need to find a doctor for my daughter

3:01
Hi Lisa! I suggest you look through our online Resource Guide for doctors and all sorts of other professionals in your area in Texas.www.autismspeaks.org/resource-guide
3:01
Simply click on your state, and select one of our over 70 categories to search. You will be able to enter your zip code. We usually recommend people put it in a wide search radius so you really get to see what is out there.
3:02
Comment From Guest

Hi, my daughter is 7 years old and we are having a hard time bringing the therpy home.. She will eat different foods in food therpy but will not even look at the food at home.

3:02
Hi- Its important that the professional working with your daughter help you to generalize the interventions at home. It would be a good idea to ask the professional to do a home visit… if possible.
3:04
If a home visit isn’t possible, ask for a home intervention plan. These are some ideas to give you a start.
3:04
Comment From Nicki

My son is 4 will be 5 November 4th..I have a few questions actually My son has never been properly diagnosed as Autistic, but he has shown so many signs they said he tested at the “mentally retardation levels” When they said this I became very peeved! I told them what he does and they said I have no idea what I am talking about…My son repeats everything and anything,Don’t know his colors can’t count other than up to 5 and also hardly ever sleeps.They told me to give him Tylenol PM I have and I have also tried melatonin. Nothing is working I can’t get him to sleep at all….What is there I can do? I live in Kansas City Missouri? Some1 please help me he hasn’t slept since he was 2 yrs old other than here and there and he keeps humping everything!

3:05
Hi Nicki. I would recommend that you start with your pediatrician. He/she should be able to make a referral to a developmental pediatrician or a neurologist who can properly evaluate your son.
3:05
The earlier the diagnosis of autism, the better the outcome will be, so it is important that you find someone who will listen to your concerns and help you work through the difficult issues you are having.
3:06
You should also try searching our online Resource Guide for professionals in your area: www.autismspeaks.org/resource-guide
3:06
We have a page of tips and resources related to sleep that may help you as well: http://www.autismspeaks.org/family-services/health-and-wellness/sleep
3:07
Comment From Maria Perez

He is receiving speech therapy at school and also social skills on the weekend is there any computer softwares o pograms that can help me get him to start talking a little more

3:07
Maria, we have lots of great tools in our online Resource Library! One of them is called Online Learning Tools.http://www.autismspeaks.org/family-services/resource-library
3:08
We have TONS of great resources on that page including hundreds of books, some games, sensory products, online learning tools, websites for families, and much much more!
3:10
Comment From Natalie

My 9 y/o was just diagnosed with aspergers 2 weeks ago. What is the best thing to do for him being DX so late? I don’t even know where to begin.

3:10
Hi Natalie- we’ve created the Aspergers Syndrome/ High Functioning Autism Tool Kit. You can download the kit or call 888-288-4762 and order a kit to be delieverd to your home.
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:13
Comment From Debbie

Hi… I’m Debbie and my son was diagnosed last Dec. Right now, we are looking for local groups so that he can have the opportunity to socialize and make friends. I’ve been trying to advocate for some kind of networking/supportive group for the parents at our school. My question is do I need to advocate somewhere else in the government in our city or can it be successfully done at the local school level?

3:13
Hi Debbie. We have lots of social skills programs, after school programs and recreational activities in our Resource Guidewww.autismspeaks.org/resource-guide
3:14
That is great you are advocating in your school for a support group. Support gruops can be so helpful to families of children with autism. I suggest you speak with other parents in the school who have children with autism or another developmental disability to get started. You will also likely meet lots of parents through these other programs who I’m sure would love to join a group of parents.
3:16
Comment From Guest

It is difficult to discipline my child. He crys incontrollably when I call him out on his bad behavior. Any suggestions?

3:16
Hi- Its important to understand the behavior, when it happens, how often and under what circumstances. Does the behavior occur at school?  I would recommend a Behavioral Assessment completed by a professional who understand autism. Your child’s teacher may be able to recommend soemone. You can also check our Resource Guide.
http://www.autismspeaks.org/resource-guide
3:17
Comment From Jenn

Hello, I happen to be an adult with asperger syndrome. I have an asociate degree & i’d want to work with preschool age kids on the autism spectrum.

3:18
Hi Jenn! That is great to hear you are interested in working with preschool age kids. We do not provide direct services here, however there are lots of preschools and recreation programs, social skills groups, etc. in our Resource Guide.www.autismspeaks.org/resource-guide
3:18
I suggest you reach out to those providers, and also to local autism organizations to find out what is out there. Best of luck to you!
3:18
Comment From Danielle

Hi =) I have a 3 year old little girl with aspergers. She tends to melt down every time you ask her to do anything and sometimes its just when you in speak to her in general – It can even be over something she really likes and it can be positive and she still melts down! Is this typical behavior???

3:20
HI Danielle -Autism Speaks has created an Aspergers Syndrome/ High Functioning Tool Kit. You can order a copy at 888-288-4762.
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:22
it’s important to work with your daughter’s team to better understand this behavior. A behavioral assessment will give you a much better understanding of the function of the behavior.
3:22
Comment From Liz

I have not been able to go back to work the past year because I have been home with my 2 soon to be 3 year old who has been undergoing therapy for speach delays, developmental delay and sensory issues for the past 12 months. We did not get a diagnosis of Autism until about a month ago…my staying home has taken a huge tole on our family. Dad has had to work full time jobs to keep us afloat. Are their any resources or assistance programs for families like ours?

3:22
Hi Liz. We have a list of resources in our Resource Library for Families In Need which you can see at this link:http://www.autismspeaks.org/family-services/resource-library/families-need … I also suggest you contact local autism organizations which you can find in our Resource Guide who may know of more opportunities at a local level:www.autismspeaks.org/resource-guide.
3:23
Comment From Maria

Hi I have a question should we send our autistic son to preschool? He is high-function knows how to read, write, numbers from 1-100 and additions . I Don’t want him to go to preschool he is already on ABA program and I believe he is going to learn more with them than preschool. We had his IEP meeting and I feel pressure from the school staff.

3:26
Hi Maria – Its important to work with the IEP team on what’s best for your son. You should feel confortable expressing your concerns and also hearing why the team is recomedning pre-school. Pre-school is an opportunity for socializing that a child doesn’t get at home.
3:27
Comment From Jackie Gonzalez

First of all thank you so very much for being a reliable resource for families..

3:27
Comment From Gloria

Does anyone know of any sports organizations in the Dallas area for special needs kids? My son has Autism but loves sports even though he really can’t follow the rules he would love to play with kids his age, any suggestions?

3:27
Hi Gloria – I suggest you check out our Online Resource Guide which has lots of recreation opportunities and after school programs www.autismspeaks.org/resource-guide. We also have a Community Connections page on Recreation that has lots of resources as well http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:28
We also have a special page in the Health and Wellness section of our website called Fitness that provides lots of information and resources for sports for kids with autism:http://www.autismspeaks.org/family-services/health-and-wellness/fitness
3:28
Comment From Courtney

My son’s pediatrician tested him in office and told us he has high functioning autism. It all makes so much sense now, but we can’t have him seen by a psychologist until March of next year and I feel like I’m lost. My son is 8 and his violent outbursts are getting worse, what should I do until he is able to see someone?

3:30
hi Courtney, I would recommend you start by talking with your son’s teacher. He may need support during the school day, and they may want to complete assessmnets to identify his strengths and areas of needs.
3:31
Comment From Janna

I live in Colorado my work falls under a church plan for insurance which excludes them from ABA services through HIMAT I have been to the head of HR and Bren declined this year or next that try will be adding it as a benefit, how can I get help with ABA without insurance coverage?

3:32
Hi Janna. I’m sorry to hear you are having trouble with insurance coverage for therapy services. This is a major problem in the US. There are now 28 states who have mandated insurance coverage for services for kids and adults with autism. That is a huge goal of our advocacy efforts at Autism Speaks. You can check in on your state at www.autismvotes.org
3:32
You can also email our advocacy/government relations department for more specific help atgovrelations@autismspeaks.org.
3:33
Comment From Jackie Gonzalez

My question is…..any advice for a 4 year old who refuses to share? So much so that he becomes aggressive? Towards himself, his 2 year old brother, classmates and teachers?

3:35
hi Jackie- Its important to know under what circumstances the behavior occurs. Getting an understanding of the behavior is so important, and you may want to consider a behavioral assessment by a professional who is qualified and has worked with other kids with autism.
3:36
Your child’s IEP team can help to identify a Behavioral Analyst, a person who is trained to assess behavior and put a plan in place to change a behavior.
3:37
Comment From MariaH

Should I tell them that I want my son to go to a special Ed preschool ?

3:39
Hi Maria-I would suggest that you and a IEP team member visit a few pre-schools and make a decision based on what you observe and your child’s educational, and social needs.
3:41
Comment From Guest

My daughter is 22 months old. She is currently being evaluated for Autism by TEACCH in NC. She receives speech therapy and OT from the CDSA. The argument with giving her a diagnosis is that one she makes eye contact and two gesturing, she shakes her head yes and no but not always appropriate. She definitely has some sensory issues. She only has about 5 words. I also think she is doing some stimming, spinning, smacking herself in the head and repeating a sound over and over. Melt downs are huge for us in stores and resturants.

3:41
Hi Guest. That is great to hear that you are already working with therapists and professionals on your 22 month old daughters development. Early intervention is an extremely critical component of improvement and it sounds like you are right on track.
3:42
Every child with autism is very different, but the symptoms you are describing are often common in kids on the spectrum. I suggest you check out our Learn the Signs section of our website or view our Autism VIdeo Glossary which shows videos of kids with and without autism. You can check those out at the 2 links below:
3:42
Comment From Guest

Do you know of any organisatons that assist parents who are not able to afford the cost, in getting an ipad for non-verbal children with autism?

3:43
Hi Guest. The Autism Society recently put together a list of organizations that may help in funding iPads for children with autism. You can see the list at: http://www.autism-society.org/news/funding-for-ipads.html
3:44
We have also heard a lot about iTaalk http://itaalk.org/
3:45
Comment From Brandon

I have aspergers autism, I’m high functioning, is there any support groups in Portland, or. ?

3:45
Hi Brandon! Thank you for joining us today. I suggest you search our onlien Resource Guide for Support Groups in your area:www.autismspeaks.org/resource-guide
3:46
We have also heard about an online web support community called WrongPlanet.net http://www.wrongplanet.net/
3:47
We have 2 categories of websites on our Resource Library that may help you: Adults with Autism, and Asperger Syndromehttp://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:47
Comment From Guest

Thank you.

3:47
Comment From Brandon

Thank you

3:47
We are happy to help. Thank you all for joining us today!
3:48
if you have additional questions you can 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 at familyservices@autismspeaks.org.

England’s National Autistic Society and Goldman Sachs Win Award for Employment Program

October 20, 2011 Leave a comment

England’s The National Autistic Society (NAS) and Goldman Sachs were awarded the Corporate Social Responsibility Project of the Year at the annual Charity Times awards 2011. The NAS and Goldman Sachs took home the award for their partnership, Prospects, which helps young adults with autism find paid employment.

Prospects, which offers one-to-one sessions and group workshops covering communication skills for the workplace, job-searching, interview skills, choosing an occupation and creating an effective CV, first began placing candidates with Goldman Sachs in 2003. Learn more about the award from the National Autistic Society site and on hereisthecity.com.

10 Providers for Teens with Asperger’s – Recommendations from Parents Who Have Been There

October 20, 2011 18 comments

Over 700 parents of teenagers with Asperger’s Disorder have registered on MyAutismTeam.com – a site where parents of children on the autism spectrum connect, share recommendations of local providers, and share tips with each other.  That’s about 20% of all parents on the site.   These parents have spent years building up their “autism teams” – all of the providers needed to help their children develop and thrive.  They have endured a lot of “trial and error” to find what therapies (and which providers) work best for their teens.  We looked at all the parents of children with Asperger’s Disorder on MyAutismTeam, narrowed it down to those with teens on the spectrum, and read through their stories and teams.   Summarized below are five of the more common, and five more unique, types of providers on these parents’ teams.

5 Common Team Members for Teens with Asperger’s

5.         Pediatrician – Every child needs one, but finding one with some understanding of autism and sensitivity to the needs of a child on the spectrum is important.   Autism was not nearly as recognized 10 years ago (when many of these parents were first seeking answers) as it is now, so some parents have had to “break in” their pediatricians over the years – sticking to their guns and insisting on a referral for a diagnosis when the pediatrician has told them something like, “Speech delays are normal for a boy of his age”.   You may not find a pediatrician with formal training in autism, but it’s helpful to find those that regularly see kids on the spectrum.   If you need help, there are over 670 pediatricians marked “Autism-Yes” on MyAutismTeam (meaning another parent or our partner, Autism Speaks, has indicated that the pediatrician is experienced working with children on the spectrum.)   If you can recommend a fabulous pediatrician, please find them on MyAutismTeam and add them to your team.   A word from you can save another parent months of “trial and error.”

4.         Psychiatrist / Psychologist – For initial and ongoing evaluations that not only help guide the types of therapies you pursue for your child, but also help in securing necessary services from schools and insurance companies.  A psychiatrist has a medical degree and can prescribe medications.  A psychologist has a doctoral-level degree in psychology.  (Note: Many parents report seeing a Neurologist as well.)

3.         Dentists – It’s hard enough to bring a neurotypical child to the dentist every six months, but to a child with Asperger’s and sensory sensitivity, a trip to the dentist can be daunting (even for a teen).  That’s probably why so many parents list a dentist as part of their Autism Teams.    Finding a dentist that is sensitive to those needs and skilled at working around them is a big deal.   Some parents seek out dentists that put their patients under anesthesia to make the process go more smoothly.  Check out Autism Speak’s Dental Tool Kit for more tips on making visits to the dentist office less stressful and more productive.

2.         Early Intervention Therapists – When asked “What therapies worked best for your child” more parents respond that ABA, occupational, social integration and speech therapy were the most effective in helping their children make progress.    They seek these therapies out through their IEPs at school, privately if they can afford them, and through other local resources where they exist.  One of the most common challenges parents discuss on the site is helping their teens build social skills and relationships with other kids their age.   BethComptonMathie ofMorristown,Tennessee explains, “My son used to have friends but the older he gets, the harder it gets. [He] is focused on video games.”  She has tried social classes over the summer and her son now works with a psychologist who visits the school each week from the same summer program.  Other parents have reported that occupational therapists have vastly improved their child’s handwriting.

1.         Respite Care -  Every parent needs a break of some sort.  A time to run an errand , do something for themselves, or just recuperate.  Many parents list the local chapters of Easter Seals as an invaluable resource for finding respite care and preserving their personal sanity.   As one veteran mom responded on lessons she’s learned, “I wish I knew how important it was that I make myself a priority. It’s the little things that I carve out in MY life to self-nurture that give me the strength to live, laugh and love more deeply today and be the best parent I can be.”

5 More Unique Providers You May Not Have Considered

5.         Martial Arts Instructors – Martial arts from an understanding instructor can promote focus, discipline, self-confidence, and physical stamina.  Numerous parents on MyAutismTeam start their child in martial arts classes at age 5 or 6.  In some instances it’s an activity that dads do with their children.

4.         Horseback Riding Therapy –  Occupational therapy through horseback riding can be a wonderful experience for kids with special needs.   CaddysLady of Vancouver Washington lists two such providers on her autism team.

3.         Attorneys – Sometimes attorneys specializing in special education law have been helpful for parents struggling to get the appropriate services from their school district or in securing coverage of key therapies from insurance companies.    One New Jersey mother of a 20 year old with Asperger’s has an attorney to help secure the things the services that come after the teenage years.  “After 2 years of fighting for Transitional Education, and winning in Court, my son has almost completed his first 30 days in a specialized school.”

2.         Piano Lessons – Quite a few parents have piano teachers on their autism teams.    I think a mother of 5 year-old (not a teenager) with Asperger’s, Sharon Esch ofAlbuquerque,New Mexico, sums it up perfectly.  “Music seems to be a great therapy for [my son], giving him an opportunity to work on fine motor skills in a way that doesn’t seem like work.  Also, I think he enjoys the immediate response of hearing music when he plays, something he controls himself.”

1.         Barbers – Like the dentists, every child needs a barber, and every child on the spectrum needs a barber who “gets it.”   For a particularly inspired and touching account of the bond between one teen turned adult on the spectrum and his barber read Laura Shumaker’s brilliant piece, “Mentor, Helper Friend.”

Who’s On Your Team?

You can see all of the parents of children with Asperger’s Disorder on MyAutismTeam and read through their stories and see their teams.  You can also post on their walls and ask them questions.  If you have fabulous local providers you can recommend to other parents just starting out on this journey, we hope you’ll join MyAutismTeam and share your wisdom!

Posted byEric Peacock, GM of MyAutismTeam

@ejpeacock

Rachel Pollack LIVE Chat Transcript

October 19, 2011 Leave a comment

Rachel Pollack, Chief Operating Officer and General Counsel of Job Path, answered questions about employment, in recognition of October as U.S. Department of Labor’s National Disability Employment Awareness month.

Since 1978, Job Path has helped people with developmental disabilities find and excel in mainstream jobs where they work alongside non-disabled colleagues. Job Path graduates work in banks, retail establishments, restaurants and other organizations.

4:02
Hi Everyone, my name is Rachel Pollack, I am the Chief Operating Officer at Job Path, that provides among other things, employment services for people with autism spectrum disabilities. I have been working in the field for over 15 years, am a lawyer, and have a 22-year-old son with autism.
4:03
Comment From Lisarae

My daughter is 19 and will be losing her SSI on Nov. 10th. She has Apergers and will somehow have to make up that money in the job force. Is their hope? Can she do this? She is very high funtioning but just does not understand social ques very well.

4:05
Hi Lisarae – I don’t know why your daughter is losing SSI at 19 so you should consult with whatever legal services are available to see if there is anything you can do about that. YES there is hope you can find a job for your daughter- just be sure you are looking for a job that matches her strengths and interests. We find that when we work with people and match them to their strengths and interests we have very good success and up to 90% retention rate. Each state has state vocational services and providers that can work with you to help you find a job. I understand that the Autism Speaks Family Services page has a link to vocational rehabilitation services. The important thing it to be a consumer and interview those agencies and try to find one that matches your daughter. http://www.autismspeaks.org/family-services/resource-library/adults-autism

4:08
It might be interesting for people to see what we have found works with people with ASD in looking for employment. We are looking for a customized employment approach that relies on a discovery period where employment specialists spend time in the home and community of people with disabilities. Learn about their interests, strengths, and needs then network with employers that has tasks employees can do in that environment.
4:08
Comment From Monique

Have you attempted to get your daugther an extension on her SSI?

4:09
Comment From Guest

We have a 17 yrs old son. He is very easily angered. Do you have any suggestions?

4:12
Hi Guest – If someone gets easily angered, the important thing is to think about what his trigger points are and to be looking for a job that doesn’t create those triggers. To have a job coach who understands what those trigger points are and who will work with him on those trigger points. We have also found that if that person is on the job and they don’t have a job coach there all the time, they can contact their job coach by cell phone when they feel angry. We have arranged with employers to have accommodations with individuals to remove themselves from the job situation when they are feeling under stress or have brief timeouts during the work day. The important thing is to find an environment that can help accommodate those individuals best.
4:12
Comment From Lisarae

@ Guest…A sensory room helped my daughter with anger….and swinging! We built a giante swing that gets her a good 12 feet in the air and she pumps long and hard! LOL

4:13
Comment From Lisarae

How do I retain these services you speak of?

4:16
As I mentioned, most state agencies have provider agencies that provide support and trainer. The important thing to do is perform research to see which agency provides as much individual attention as possible. There are some agencies around the country that are provider customized employment services, a starting place to find that would be to go to the website Marc Gold and Associates which is where we learned this lesson fromhttp://www.marcgold.com
4:17
Comment From Guest

My brother is 40 with aspergers and is currently struggling to find work. Are there job training opportunities available, if so, where do I go to find them. His primary issue is social.

4:18
Currently, I don’t know of any specific job training programs geared to this group of people. The important thing is to encourage your brother to get training in an area that he likes, that he feels comfortable with, and that is going to play on his strengths.
4:19
There are, for younger people around the country, a range of college support programs, some are publicly funded, but many are privately funded. There are some specialized vocational internship programs – most of which are very extensive.
4:23
I always encourage parents, who are looking for an agency to work with them to do extensive interviewing. Often when you go into a state referring agency, they tell you who they think you should work with. You, as an advocate for your family member, should feel comfortable asking questions about the agency and also asking them for other possibilities. You will want to know about supportive employment programs as well as training programs. A training program will provide training in a particular set of skills. A supportive employment program will start with the abilities an employee has to help them find a job and then provide job coaching. You’ll want to choose whichever type of program you think is best for the family member you are trying to help. Don’t be afraid to call up the agency and ask if you can come in and talk with them. Any agency that is going to work well with an individual will be willing to do that. I am always ready to do that and I am very busy!
4:24
Comment From Jessica

I am currently working on my Bachelors Degree in Psychology, through the University of Phoenix. My goal is to work with special needs children, but I would like to keep my options open as to how exactly (teaching, counseling, therapy, etc). I was wondering, to achieve this goal, should I get my Masters Degree in Special Education, or in the Science of Psychology? Thank You for your time.

4:26
Hi Jessica – I think that a Master’s Degree in Special Education is a wonderful degree that you can use in any work that you are going to do with children or adults. Our director of employment services has a Master’s in Special Education that she has been using to provide individual guidance to adults and assistance for vocational rehabilitation. My understanding is that most special education programs have a range of tracks so that you can customize your degree to the kinds of work you think you may be interested in.
4:27
Comment From Lisarae

My daughter has pedantic speach….will a potential employer understand that in the interview process?

4:27
Comment From Lisarae

Does she need paperwork to enter an agency like that or just a diagnosis?

4:27
Comment From Lisarae

My daughter would do well working alone, like stocking shelves at night in a grocery or retail store, I think. Lets just hope those jobs are out there.

4:32
Every state agency is going to require different amounts of paperwork that the chances are the agency will want some type of documentation of a disability, but that will depend on the state agency. Many state agencies will send, if you don’t have the documentation you need, your daughter or son to a psychologist that they will pay for. In terms of the pedantic speech in the interview process, we at Job Path, try to downplay the interview process for the people we work with. A good employment agency will be introducing the employer to your strengths before her interview and will persuade the employer that the interview process is a more a chance to get to know your daughter than a test of her speaking abilities.
To your last question about jobs being available, one of the strengths of customized employment, we aren’t looking at open jobs, rather unmet needs by employers. The idea is to find tasks that aren’t being done by current staff at the busiest hours of the day, or at time of day when other people aren’t available, to to help staff who are overloaded, or to take other tasks other staff are doing that your daughter can do better. You are not looking for job posting as must as you are looking for specific needs of employers that they have not put in a job posting.
4:32
Comment From Michele Vics

I believe I am on the autism spectrum but I haven’t received an official diagnosis. How do I get around that when it comes to job seeking?

4:34
Hi Michele – If you are going to want an accommodation on a job, you are going to want to get an official diagnosis. If you want a referral to a psychologist, most state agencies will send you for an evaluation. In terms of job seeking, if you are having trouble with the interview process, it is very helpful to have an agency involve to help you network.
4:35
Comment From elizabeth

My son is nineteen and was diagnosed with Autism when he was four. We are fortunate to live in Texas where there is help for individuals throughout their school years to recieve help. He is currently going to a school that provide job training until he turns 22. He is not severe and can be quite pleasent to work with at times. During his high school years I worked on my Associates Degree in Criminal Justice and finished my Bachelors Degree in Social Management, I would like to work with children or with families with children of special needs, but am not sure where to begin. I have applyed at a large school district but have not had success getting through with them. What would you suggest? I am open to returning to school again…Sincerely, Elizabeth

4:37
I think it is terrific that you’d like to work in this field and your experience with your son will be invaluable. There are lots of opportunities for working with families of children or adults with special needs in the adult service system. The adult service system needs really, really good people. if you are not having success with your school district, I would suggest that you look for opportunities in the adult system, in your state.
4:37
Comment From Monique

Hi Jessica. I believe an the Masters in Special Eduacation will offer you more options. As long as the degree is a science degree you will be able to teach. So if the Masters in Special Education is a science degree you will be able to teach and work in your career of interest. So to me two is better than one. I just obtained my Masters of Science in Psychology from the University of Phoenix this pass June. Good Luck. Also, make sure you ask your academic counselor which offers you more options so you want be wasting your time.

4:37
Comment From Colleen

My son is 15 years old. Do you have any suggestions for how I can start working with him so he is better prepared for a job?

4:41
Colleen – 15 years-old is the ideal time to start preparing your son for a job. The most important thing is for him to have the expectation that he is going to work. Too often we work with young people who don’t have that assumption. Second, look for all types of volunteer activities in his community where he can gain self-esteem, connect with a range of people and obtain discipline and a work ethic. You might want to refer to the Autism Speaks Family Services Transition Tool Kit which will give you a range of idea http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kitThe most important thing in looking for internships or volunteer opportunity is looking for an environment where he will thrive so he will have success and feel motivated.My son was lucky to have a high school program that provided work experiences throughout his high school years and it was invaluable. Even if his high school doesn’t have that, you can look for that for after school and weekend activities.
4:41
Comment From Nancy

When my son gets a job, how can I make sure that the people he works with know how to work with him so he can succeed? I’m a nervous wreck!

4:44
Nancy, I think it is important if your son feels comfortable, to have him for and an advocate, discuss in advance with the employer how his disability may affect him on the job and what he needs to succeed. When we place someone with ASD on a job, we meet with the employer and staff before with the individuals permission and describe the ways in which the disability may appear and affect the person. Most employers that we work with this information, embrace it, particularly if they know they have a motivated employee who has skills and who will work hard
4:44
Comment From Liz

Our 17 yr old son at about that age took a cooking class at the FFA in our area. He is interested in being a dietician to teach people how to eat right. Also the YMCA has all kinds of programs in all kind of interests. Good luck!

4:45
By FFA are you referring to Future Farmers of America?
4:46
Comment From gail

do people with autism who work usually like to let everyone they work with know about it

4:49
Everybody has a different feeling about that. I would say that most people fall between not wanting anyone and wanting everyone to know. We have worked with some people who don’t want to disclose, but the young people that work with us are comfortable with their diagnosis and can explain it to the people that need to know.I am always touched by how accepting employees and colleagues are when given information to help them understand. A colleagues might be offended when someone interrupts them if they don’t’ know the person has a disability, but will be understanding they know what was behind that interruption. We are working with one young man with Asperger’s who is working full time a t a law firm. He has chosen to let all of his coworkers know about his disability. He gets very anxious at times and the firm allows him to leave the office and walk around when he feels this anxiety. They appreciate that his anxiety is often triggered by the fact there won’t be enough work for him to do. The firm is able to balance the amazing abilities and motivation he brings against the occasional anxiety.
4:50
Comment From Liz

Yes I do mean Future Farmers Of America. He brought home some yummy goodies from the week long summer class.

4:52
I thought it might be helpful to find some of the jobs that some of the people with ASD have found with our agency. We have placed individuals in data entry and clerical jobs, There are individuals doing research jobs. One man is working on the Geek Squad at Best Buy. We have many young people working on stock and retail jobs. We have two individuals working in libraries as page staff. Those are some examples!
4:52
Comment From sarah

i’ve heard about the idea of job coaches in the workplace. who pays for those and what do they do?

4:54
Each state receives a certain about of money from the government which they can supplement with state funding. In New York, job coaches are provided with funding from our state agency. Individuals don’t have to pay for it themselves and employers don’t have to pay for it either. You will have to look into what the funding is for your particular state.
4:55
Job coaches will help people learn a specific task, will help people adjust to a work place, will help gain natural support from the employer and then phase out over time. I think good job coaching is one of the most important things insuring success.
4:55
Comment From elizabeth

Gail, My son is autistic, but I don’t think it even dawns on him to tell anyone he is autistic. Most of the time he will not make eye contact with others, but he is getting better. His comprehension is not his strongest point, and we tend to go in circles alot!

4:56
Even if someone can’t tell an employer that their employer has autism, there may be an advocate that can do that. In those cases, the family can work with a jobs coach staff to inform the employer they have autism
4:59
In this particular economy it is understandable for people to feel discourage in finding employment for someone they care about with a disability. The good news is that we are just as successful in this economy as we have been in booming opportunities to find job placements. The important thing is paying attention to who the individual is and thinking creatively about where they can be an asset. It is very exciting work that we do and employment is making big differences in peoples’ lives.
4:59
For more information about Job Path Employment Programs, you can go to www.jobpathnyc.org and place let us know if you have any questions or if we can help you!
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