If you feel more comfortable getting an initial screening from your pediatrician, go ahead. But please know that many pediatricians have little autism experience. My son's first pediatrician said that my boy couldn't possibly have autism because of how responsive and loving he was (and still is). It is better to go with an autism expert, though your pediatrician can still make referrals for you.
The first thing you should do is call your local regional center to get an intake appointment. You should not need your doctor's referral to call them up and get into the system; you should be able to do this yourself. They will have a social worker call you to set up appointments, which may include a series of home visits and should include a diagnostic exam from one of their developmental pediatricians. Here is a directory of California regional centers; the one you go to depends on where you live:
The regional centers are very frank and straightforward; they are not going to do much hand-holding but they will get you started. They will also fund various resources for your child and your family, including classes and therapies, camps, respite care, etc. (They may not tell you about the extent of their coverage unless you ask.) Please know that their therapeutic and educational responsibilities for your child end at age three, at which time coverage for those needs will transition to your local school district.
For a comprehensive autism intake and screening, I would call Stanford's autism clinic:
UCSF and the UC Davis MIND Institute also have clinics. My son has had evaluations at all three places, and while they all provide basically the same services (comprehensive autism screening and recommendations for next steps), UCSF's staff needs work on their bedside manner, and the MIND Institute can be very difficult to get into unless you volunteer your child for one of their research studies (but then you can get all sorts of free screenings and may even get a small stipend). Kaiser also has a clinic in San Jose.
It may take a long time to get an appointment at an autism clinic, and the appointment may end up being months away, but make it anyhow. The time between now and that day will go by faster than you think.
You should set up the following additional screenings/appointments ASAP. Ask your peditrician for these referrals or orders:
- Genetic workup for the most common conditions that emulate or can include autism, e.g., Fragile X
- Pediatric neurology exam
Ideally, the regional center or eventually school district should pay for an in-home ABA program and therapists to run it, but between now and then you can start incorporating ABA-type activities formally or informally into your child's day.
Autism Speaks is a national organization that provides free general information about the early signs of autism, and family resources:
Autism Speaks also has a "100 Days" kit to help families through the "critical 100 days following an autism diagnosis." I have not used this resource, nor do I have any feedback on it, but it seems like another potentially helpful (and free) support option that is immediately available, which is what you need right now:
Please note that Autism Speaks is controversial for their sometimes negative focus on autism as a burdensome condition. Though I wish they were more inclusive of autistic voices and demonized autism less, their outreach and support efforts are still valid and useful. Keep informed:
I am also particularly fond of the Autism Games site, for ideas and activities about engaging autistic children:
For a book about parenting an autistic child, I recommend Susan Senator's Making Peace With Autism.
For a fantastic read about autism and being autistic, I recommend Temple Grandin's Thinking in Pictures.
Even if your child ends up with an autism diagnosis, no one can predict what that means for him or her. It is different for each child. That is why autism is a "spectrum disorder."
Please be kind to yourselves. Don't listen to anyone who offers you miracle cures or recoveries, or read books about such things. They will only sidetrack you into thinking about the child you *could* have, rather than the child right in front of you. Focus on your child, on helping her or him gain skills, on fighting for resources, on loving your child, and on parenting your child to the best of your ability.
You are going to be okay. You child is going to be okay.
Contact me whenever you need to.
Please note that the regional center and clinic resources are specific to California and The San Francisco Bay Area.
Technorati Tags: ABA therapy, autism, autism awareness, autism blog, autism games, autism research
This post is a great resource for parents who have just learned or suspect that their child may have autism. It's wonderful - I know that if it were me, I would be scared and overwhelmed about how little I know. Doing the research, having the reassurances etc. would help me immensely! Thanks again!ReplyDelete
Autism Speaks has a great sibling group that I just hooked up with.
I'm enjoying it very much!
This is just wonderful, Squid. I wish I had just this in the early days -- either early intervention, when things were ambiguous, or a year and change later, when things were slapped with the big scarlet A and I could no longer preface everything with "delayed but not necessarily..."ReplyDelete
One thing, though -- the regional center obligations do not entirely end at age three -- they remain on the hook for everything the school district is not -- life skills and home-based needs unrelated to educational/school-based functions. For instance, our regional ctr still funds social skills, respite services, self-help behavioral services, and summer camp or community aide/behavioral hours for times when school is not in session.
@Veronica, thanks for the clarification. You've really got your RC working for you! Fantastic.ReplyDelete
@Shark Fu, so glad to hear you've found some backup; thanks again for trailblazing my daughters' paths.
@Melissa, thanks. This is merely what I wish someone had told me.
Great recommendations. It is so important that parents get their children services asap! It can make all the difference.ReplyDelete
The one thing I would not (and do not) recommend to new parents is Senator's book. She takes such a passive attitude and her son eventually ends up in residential. Sorry, this is not the story I think new parents with kids diagnosed should read. There are so many other books out there from very proactive parents regarding therapy and biomedical intervention.
@9:17 anonymous, please let me know if you have another recommendation for parents. And just in case the written word is not conveying my tone properly, I mean this earnestly and not snarkily.ReplyDelete
I found Susan's book to be reassuring, and frank in its discussion of the many difficulties her son and family faced: their methods for dealing with complicated behaviors including masturbation, and educational placement mistakes they would in hindsight not have made. Overall her attitude is of acceptance and championing. Parents new to the world of autism can learn a lot from her.
Her son's residential treatment is something she has discussed in her blog, but her book's time frame ends with her son still in school. And still at home despite very serious thoughts about placing him in residential treatment when he was eleven: http://autismdiva.blogspot.com/2006/07/life-is-hard.html
For the families of autistic children, attitude is critical. And I will continue to admire Susan's approach to her rich and interesting life.
Here are the books that I immediately recommend to parents:ReplyDelete
(in addition to the Behavioral Intervention Book by Maurice that you already mentioned):
A Work In Progess - Ron Leaf/John McEachin
Facing Autism - Lynn M. Hamilton
Early Intervention and Autism - James Ball
Teaching Children With Autism To Mind Read- A Practical Guide For Teachers And Parents - Simon Baron-Cohen/Patricia Howlin
Making A Difference - Maurice, Gina Greeen, Richard Foxx
Decreasing Behaviors in Persons With Autism - Richard Foxx
Increasing Behaviors In Persons With Autism - Richard Foxx
These are the books parents should be literally memorizing. The interventions in these books are what makes a difference in a child's life.
I would also add:ReplyDelete
Teaching Language To Children With Autism - Mark L. Sundberg, PhD and James W. Partington, PhD
Reaching Out, Joining In. Teaching Social Skills To Young Children With Autism - Mary Jane Weiss, PhD, Sandra Harris, PhD