Tuesday, August 26, 2008

What's Next?

It is a situation that I honestly did not anticipate occurring in our lives again. That feeling - soon after a child is diagnosed with autism - of "Now what do we do!?"
Let me begin by saying that the operational aspect of this is soooo much easier than last time. When J was diagnosed in 2004, it took several months for us to get our bearings. I'll never forget leaving the hospital that day. Being told that J is autistic, then being handed a packet of information/local contacts/agencies, and being shown the door. At that time, I knew nothing about autism. I wrote about the drive home here.

This time, the feeling of disorientation is there again. But it is rooted in different lines of thought. Now we are very familiar with what to do, and what not to do. We're not hitting the panic button as before, nor are we organizing our family and friends into a quasi-military command structure in order to "combat" autism or "defeat" our family's new circumstance. No, we are much more accepting of the inherent good and not-so-good that accompanies the effort to raise an autistic child. More importantly, we are acutely aware of the challenges - moment by moment, day by day - that are facing our little guy. I think we can do a better job this time of balancing his needs with trying to promote the most positive outcome in overcoming some of the disabling aspects of autism. And, unlike before, he and we have a role model for success in the first few years (his older brother). And we already have a great support-framework in place (a very supportive family, real-life friends on and off the spectrum, numerous professional contacts, and an immensely supportive online community who have already provided staunch emotional support accompanied by personal anecdotes and great advice). Let me take this opportunity to thank each of you who commented on my last post announcing baby C's diagnosis, those who felt supportive but did not or could not put their thoughts into words, and those whp sent personal emails. All messages were read, digested, and appreciated.

So that leads me back to, What's Next?
In a great coincidence, the answer to that question came in a peer-reviewed, published paper approximately 10 days prior to C's diagnosis at Children's Hospital.
I cannot link you to the full paper, but here is the abstract as listed on PubMed.

The study is titled "Properties of supportive relationships form the perspective of academically successful individuals with autism", and it was authored by Dr. Jodi Robledo and Dr. Anne Donnellan, both of the University of San Diego Autism Institute. If you need more info on the USD Autism Institute, simply look at the Home Page of the Autism Hub, and you will find them listed under "Autism Hub Friends". Or, here is a direct link.
The really important aspect of this paper is that, by interviewing autistic adults, the authors established 6 factors that were deemed as being essential to their success in building relationships. It is extremely gratifying to me to see researchers intentionally positioning autistics as a primary source of experiential information, and basing their findings on these experiential factors. This is an unfortunately rare circumstance in autism research today, and the results are - to my way of thinking - all the more valuable as a result.
Before I discuss the findings and their relevancy in my family's life, a quick note about the participants. All 5 participants are young adults who have been academically successful. 3 of the 5 are non-speaking and communicate through typing. I have personally met three of the five participants, and will attest that their autism-related challenges are as significant as a researcher is likely to find.
The results of the study essentially consist of the responses of these 5 participants, and the translation of these responses into 6 categories. The participants were asked to identify 2 to 4 individuals with whom they had a supportive relationship, the definition of supportive being left up to the participant. When the data - collected via face-to-face interviews, email correspondence, published documents, public broadcasts, and phone interviews - were analyzed, 6 major properties emerged as being essential components of a supportive relationship:

TRUST

INTIMATE CONNECTION

SHARED VISION OF INDEPENDENCE

THE PRESUMPTION OF COMPETENCE

UNDERSTANDING

COMMUNICATION

Perhaps this list struck you as you read it for the first time in the same way that it struck me.
And what struck me is that it is nice to see some research-based verification of that philosophy that I have already adopted. Anyone who has spent any time browsing the Autism Hub will agree that these properties are discussed regularly, in detail, with enthusiasm, and are universally embraced as being essential components of autism "acceptance" (for lack of a more efficacious word).

So as we move forward into building a relationship with our second autistic son, we will be keeping these things at the forefront of our minds. There is no need to reinvent the wheel, here. What is called for is to listen to those who have come before (in this case, autistic adults) and emulate that which has been shown to be effective.

THAT'S what's next.

Thanks to Drs. Robledo and Donnellan for their work on this study.
Robledo JA, Donnellan AM

Intellect Dev Disabil. 2008 Aug;46(4):299-310.

7 comments:

jypsy said...

"those who felt supportive but did not or could not put their thoughts into words,"

Thanx for that acknowledgment, know that I did try, and know that my support for you all continues.

Niksmom said...

Steve, it sounds like you are in a much stronger place now. Having affirmation that you are on the right track is always nice but those of us on the outside looking in already presumed you to be on the right path! :-)

Thanks for the link to the study; I'm going to share it with some of the professionals I know who work with autistic students.

Sending you oodles of good wishes for all of you.

kristina said...

"What is called for is to listen to those who have come before (in this case, autistic adults) and emulate that which has been shown to be effective."

Necessary for all of us, I think.

With you and yours.

Jen said...

Wow- that's a fantastic study, and it's nice to have confirmed things that we've tried to do with our kids.

Sending your family lots of good wishes.

Goldie said...

How refreshing to read the perspective of a FATHER of children on the spectrum. It puts a different spin on things... and yet doesn't. You are also just a loving and supportive parent just like us mommybloggers. =)
I can't imagine how scary it was for you to hear a diagnosis of something so unfamiliar to you. I am sorry you have to go through the "process" again, but glad you have gained some experience and a fabulous support group now.
One of my sons was diagnosed with Autism last Wed, today I am taking in my other child (alone! DH can NOT come). It might be a long drive home.

mike stanton said...

Hi Steve,
so the journey continues with an extra crew member. I think you will be surprised at how different J and C turn out to be. I anticipate that little C will decide that what worked for J is not necessarily for him and he will find new ways to keep you guessing. But he is sure to find new ways to delight you as well.

Club 166 said...

Isn't it grand to have such a great place (The USD Autism Institute) right in your backyard? How lucky is that?

Joe