Trying to find an Autism community and general advice
Hi,
My 3 year old son was diagnosed by OUSD with Autism. He is on the more typical side of the spectrum and although the diagnosis is not a huge shock, we are trying to figure out what this will mean for him in school and beyond. The school district offers us preschool at Emerson CDC in Oakland with six special needs kids and 15 typical kids with the goal to mainstream by the end of the year. We are not thrilled with it and would like to know what our other options are. We have not had a medical diagnosis yet. He is the kind of kid where it is not immediately obvious that he is different and he is very social. I have some questions and am hoping that someone who has gone through this can help navigate this a little.
1. I would love to find a GREAT pediatrician that can really take the time to help us get a medical diagnosis and help us with the ABA options. Does anyone think this is even worth doing at age three? Our current pediatric group has been extremely unhelpful and we really have been on our own since we started all this at age 2.
2. Has anyone been through the Oakland or Berkeley special ed with a very high functioning autistic kid? Has anyone done the public school preschool option? We are actually thinking of moving to Berkeley anyway for our older typical kid and would love to know if it would be better. We are also willing to move to Orinda or Lafayette.
3. We would LOVE to find other parents with high functioning Autistic kids or some sort of support. I dont know anyone with atypical children, and it is feeling pretty lonely. I also worry about him having friends, he really enjoys playing and interacting with other kids his age. My biggest worry is that his differences will affect his ability to have close friends.
4. Are there any private preschools or elementary schools that would be an excellent place for a highly functioning, very intelligent autistic kid?
Thanks!
sklevine123 [at] gmail.com
Parent Replies
Hi there,
I have a 5 year old with autism who was diagnosed at the age of 3. We live in the Dublin- Pleasanton area and he has benefited from going to the DUSD public school preschool a lot, alongwith ABA at his afterschool program (with neurotypical kids involved as well). While I can't comment on the OUSD preschool, we have a had a good experience in the DUSD preschool so I can say that if the preschool is good it can be very helpful for the child.
As for a parent community- I have found the Peninsula Parents of Special Needs Kids (PPSNK) to be an invaluable online community with tons of practical advice on the entire range of issues from medical to navigating school systems (private and public both) and lots of empathetic discussions. You can check out their website and sign up for their listserv: http://www.ppsnk.org/
Another good resource is the Family Resources Navigators- and they specifically work in the Oakland area as well. http://familyresourcenavigators.org/
Finally I found invaluable advice from the Early Support Program for Autism in Stanford University which runs special (mostly free) programs for parents of children on the spectrum. They help you navigate the whole search for an ABA provider, practical advice to help your child, among many other things. http://med.stanford.edu/espa.html
Good luck!
I am a parent of two kids with very high-functioning autism, one in private preschool and one in public elementary school. So I feel pretty well-qualified to answer your questions. First off, the diagnosis is a tough time. It's overwhelming emotionally, and then a logistical challenge to try to figure out services and what to do next. It does get easier as you settle into a new reality and a new routine. Now, to answer your questions:
1. In my opinion, any supportive pediatrician will do fine. Most developmental pediatricians usually only see patients for diagnosis and follow-up related to the ASD. As long as you have a provider who is supportive and good at providing referrals will work well. Unfortunately, much like when you get sick as an adult, you are responsible for getting a diagnosis and getting additional services needed. This is unfortunately a huge pain and takes much time, especially initially when you're setting up services.
2. You can typically get the medical diagnosis from a psychologist or a developmental pediatrician. I found most Bay Area developmental pediatricians had extremely long waiting lists. You don't mention cost being a factor, so all the advice I recommend in this message is what I think is best, regardless of cost. I recommend getting your diagnosis from Dr. Brynna Siegel at the Autism Center of Northern California (ACNC) in SF. Not cheap, but in my opinion worth the drive and money. And usually not too long a wait. Once you get the medical diagnosis, you can submit it to your insurance company to request ABA services. If they're covered by your insurance, I recommend BIA. In my opinion, they're the best ABA provider, hands-down.
3. Regarding switching school districts now--it's hard to predict the future and know what your 3-year-old's needs will be by the time they get to elementary school. Especially after a few years of ABA, you will hopefully be amazed by their progress. My general advice is to do what's best for you and your older child and not make any decisions based on the younger child now. The quality of services is often extremely variable in a district, and you often don't know what a program is like until you start at a specific school. A district can have a great reputation, but the quality of services at the school is really what counts.
4. Regarding preschool, we also didn't like the choice offered by the district. Another factor in the decision is that an ABA aide can typically accompany your child to a private preschool, but this is not usually allowed at preschools offered by the district. It has been ideal to have my son, who is very high-functioning, surrounded by typically-developing peers and learning from them. And having the ABA provider at school helps him immeasurably. Some schools I know of that have allowed aides to accompany very high-functioning kids in the past are Mustard Seed, Chatham School, Growing Light Montessori and Duck's Nest, but I'm sure there are many more. Your ABA provider may also be able to recommend preschools they think would be a good fit for your son.
I believe there is a meetup group of high-functioning/asperger's families, but I have no specific recommendations regarding support. ACNC has some great, albeit expensive, programs that may be extremely helpful. Best of luck to your family.
I am not a parent with a child with autism although I am a child development specialist and work with parents of kids with special needs. You should check out Burbank school in Oakland which has a few classes for kids with autism--mostly self-contained. There are options other than Emerson. If it doesn't feel like a good fit, listen to yourself....Please contact the family resource network housed with Bananas. It is staffed by parents of children with special needs and they know a lot about what's available-particularly the director, whose name escapes me for the moment. Also alameda county first five may have some resources but FRN is a good first step for you.
Stanford has Behavioral and Developmental Pediatricians who see A LOT of young kids with autism. Heidi Feldman, MD is the director there. Absolutely, age three is NOT too early!!! There are lots of opinions about ABA. There are also other techniques which people find helpful if that technique is not to your liking. ABA is mostly what people think about (and about all that insurance will cover)but there are other ways....floor time (Stanley Greenspan) has shown great results with a different stance on what is helpful and normalizing. More family friendly....(in my opinion)
There are all sorts of support groups out there for parents of kids with special needs. FRN probably knows of these also.
Good luck....