Just got the Autism diagnosis - best resources?

[cristeen]

That pretty much sums it up.  I'm just looking for resources on making it through toddler-dom with a high functioning autistic kidlet.  We're supposed to start ABA the week after Thanksgiving, but I'd really like to do some reading, and have some for my DH too (he wasn't at the assessment with us, so he didn't get to talk to the doc). 

What are the best resources out there?  What have you found useful?  Books, websites, groups, whatever.  This is brand new to us. 

[RiverTam]

Books about autism:

The Mislabeled Child by Brock Eide and Fernette Eide

The Complete Guide to Asperger's Syndrome by Tony Atwood (My kid is dx'd with HFA, rather than Asperger's but this was still helpful)

Autism and Asperger Syndrome (Facts) by Simon Baron-Cohen 

Books that work on language and social skills:

The Social Skills Picture Book

You are a Social Detective by Michelle Garcia Winner

Superflex by Stephanie Madrigal

100% LIstening from Linguisystems (They have more language exercises at their website: www.linguisystems.com, including tons of stuff for kids with ASD).

Helpful websites:

Tool kits from Autism Speaks

http://www.autismspeaks.org/family-services/tool-kits

You might want to take a look at the 100 day tool kit for after the diagnosis for a start. 

National Autistic Society (UK)

http://www.autism.org.uk/

Geneation Rescue

http://www.generationrescue.org/

This is an organization that advocates alternative treatment and biomedical intervention. I research any suggestion that they make very carefully. Their push for chelation is a little scary to me, but their info on supplements, yeast and diet may be helpful. At the same time, I love their hopefulness. Many kids with ASD improve tremendously as they get older and with therapy.

Wrong Planet

http://www.wrongplanet.net/

A discussion group that includes a lot of people with ASD.  They have a different view of the need for a cure.

Other resources:

Check with universities in your area to see if they have support groups or clinics with services, three in my region do. Two of those are free.

Check to see if there is an Easter Seals chapter in your area that provides services. Some Easter Seals Chapters provide camps or respite weekends. 

 

[nayma]

hi.  first of all, i hope you're doing okay, and you feel like you have people around to talk to, if need be :).  for me, one of the most helpful books at that age was "engaging autism" by stanley greenspan.  it really talked about the core deficits of autism, not just the resulting behaviors.  he uses an approach called DIR/floortime, and many people feel like it's a good addition to any other form of treatment a family may be pursuing - and it's something that's very parent friendly.  i feel bad to say this, but i've read so many books, they all start to run together a bit in my mind.  the point of saying this is only to say that i don't think there's one certain book that will change your life, if that makes sense.  i think as you pick stuff up, you'll feel out whether it works for you or not.  i think many of river tam's suggestions are great!  if you have a good local library, many great books will be available, and i highly encourage that over shelling out all the money for a book you may not love.  also, many larger hospitals or autism resource groups have lending libraries. 

also, i would encourage you, at some point (when things settle), to seek out peer support.  for me, finding another parent with whom i could REALLY relate was priceless- and equally as helpful as any book i ever read.  also, i found some really great blogs that helped things make sense, put things into perspective, etc.

glad you found this forum- it has been so helpful to me over the last few years!!

[sbgrace]

I found the greenspan/floortime approach most helpful in that age too. It helped me engage my son and help him make discoveries socially that he wouldn't have made otherwise. This does come from a completely different perspective than ABA. ABA is a behavioral approach while floortime is developmental (as is RDI which we did later). You could certainly use floortime principles yourself though even if someone else is doing ABA with him. Different things are fits for different kids.

Don't be surprised if it takes some people (even a spouse) longer to accept the diagnosis fully or they handle it differently emotionally. For many people it's a process. I hope you have someone who can support you, listen, and hug or whatever you need.

[RiverTam]

Originally Posted by sbgrace 

I found the greenspan/floortime approach most helpful in that age too. It helped me engage my son and help him make discoveries socially that he wouldn't have made otherwise. This does come from a completely different perspective than ABA. ABA is a behavioral approach while floortime is developmental (as is RDI which we did later). You could certainly use floortime principles yourself though even if someone else is doing ABA with him. Different things are fits for different kids.
Don't be surprised if it takes some people (even a spouse) longer to accept the diagnosis fully or they handle it differently emotionally. For many people it's a process. I hope you have someone who can support you, listen, and hug or whatever you need.

You can absolutely combine Floortime and behavior therapy. We did.   I like Floortime's emphasis on letting the child lead. I like that philosophy in general for parenting, though.  

We just a lot of behavior therapy for shaping specific speech behavior and for dealing with temper tantrums and problem behaviors. We used Floortime techniques for encouraging social relationships and building a relationship with DS1.  

Floortime is a kind of behavior therapy, with the emphasis on taking activities that the child finds rewarding and using them to shape/reward desired behaviors. It's a basic premise of behaviorism that you use what the patient finds rewarding in order to move him/her towards desired behaviors. 

My husband has an MS in clinical psych with an emphasis on behaviorism. It was pretty easy for us to do this at home because he already had the training. Cost might be a problem for others. 

[Fay]

You can incorporate basic principles of play therapy into everyday activities to support your child's natural development better.  Here's a short article that explains how: http://blog.friendshipcircle.org/2011/04/14/5-steps-to-getting-started-with-play-therapy/

If you have a toddler, I strongly recommend the book Play to Talk by MacDonald.  The methods are easy to integrate into everyday activities and are all evidence-based and attachment-based.

The best resource out there is a positive attitude.  Seriously.  I've found that professional training matters very little.  My DS1 was diagnosed with ASD and Intellectual Disability as a toddler.  He's 10 now, in a regular 5th grade class with an aide.  He's an affectionate, fun-loving, deeply spiritual kid.  I wish you all the best on your journey.