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
Eric Peacock is the GM of MyAutismTeam and Insider Pages and is passionate about empowering patients. He lives in San Carlos, CA with his wife and two kids – Jack (7) and Katie (4) and is a hopeless Red Sox fan. You can follow Eric and MyAutismTeam on twitter at @ejpeacock and @MyAutismTeam. Visit www.MyAutismTeam.com for more information.
The Top 7 People Who Helped One Mother’s Child with Autism
When Sharon Esch’s two-year old son Adam was diagnosed with autism, she threw herself into researching and finding the best team of people who could help her son. This wasn’t a turn-key process. In fact, it took a couple of years and lots of “trial and error” for Sharon to architect the best team of providers who could effectively help Adam thrive. Among others, her team included:
1) a speech pathologist
2) an occupational therapist
3) a child psychiatrist specializing in autism
4) a dentist sensitive to the needs of a child with autism
5) an understanding and calm hairdresser for Adam
6) an inclusive gymnastics instructor
7) A caring librarian at a toy lending library
Feeling like she was forging her own path, Sharon started from nothing and built Adam’s “autism team” on her own. She pored over resources online and offline to find providers, “hounded” her state’s early intervention offices until she got basic services, tested and walked away from some providers, and fine-tuned his team as Adam’s developmental needs changed.
Today, thousands of parents of children with autism are going through this same frustrating experience. They feel alone, and despite the fact that other parents have gone through this process before them, they don’t have a way to easily learn from their experience and end up re-inventing the wheel. This is the inspiration behind MyAutismTeam. www.myautismteam.com
MyAutismTeam is a free site for parents (recently launched in partnership with Autism Speaks) with a very simple belief: It should be easy for parents of children with autism to find the best providers around to help them.
On MyAutismTeam you can:
- Find other parents in the autism community near you & read their stories
- See the providers (the “autism teams”) other parents use & recommend
- Ask questions and share tips about providers
- Connect directly with other parents on the site
- Search a directory of over 30,000 autism providers and autism-friendly businesses nationwide – including all of the providers in the Autism Speaks and Easter Seals databases. (e.g. you can do a search for “occupational therapists in San Francisco, CA”)
- Add providers and autism-friendly businesses to the directory
Since launching the site in April, the number of parents signing up on the site has been doubling every two weeks. Parents of adult children, teenagers, and school-age children, representing the full range of the autism spectrum are connecting, sharing their stories and their recommendations. Families with recently diagnosed children don’t have to re-invent the wheel, and the ‘’veteran’ parents also exchange information with each other as their children go through new life stages such as adolescence or transition into adulthood.
Everything from Doctors to Swim Lessons
The “autism teams” include far more than your standard autism medical experts. For example, Sharon from Albuquerque, NM and Jennifer from Redwood City, CA – have recommended over 10 different providers each including…
- Occupational Therapists
- Speech Pathologists
- Barbers (who “get it”)
- Dentists & Dental Anesthesiologists
- ABA Therapists
- Developmental Pediatricians
- Family Practice Doctors
- Summer camps
- Swim teachers
- Respite care
- Music classes and more
All Parents in the Autism Community are Welcome
We just opened the beta of MyAutismTeam to all parents and providers in the autism community across the United States. Hundreds of parents are joining each week, and nearly every one adds a new provider we didn’t know about previously.
Please join us! To learn more, you can join MyAutismTeam and begin exchanging recommendations with other parents in the autism community today. Please visit http://www.myautismteam.com and please share this link with anyone you know that could benefit from the site.
You’re not alone and you shouldn’t have to re-invent the wheel.