Saturday, December 1, 2007

Making it Worthwhile

When I started this blog in April of this year, I had already spent significant amounts of time familiarizing myself with much of the autism "buzz" on the internet. There is lots out there, from message boards to propietary websites, from PubMed to weblogs, members-only groups to daily newsfeeds.
As with anyone who wants to become involved in the online community, I had to decide what was important to me. What did I feel was an area that would stand to make me a better father for my autistic son? Did I have anything to offer to the online discussions, considering that so much had been so adequately covered already. I'm not particularly confrontational, I don't have advanced science degrees, I dont have enough internet savvy to run a "newsfeed"-type site.
One area that I felt affected me most strongly is the interaction and relationships I was able to develop with autistic adults who communicate via the internet. I've got to say this was a surpsrise to me - a pleasant one at that - because when I first encountered these online self-advocates I was still early enough in the parenting process that I did not realize the extent of positive outcomes for autistic individuals. I took it upon myself to read a lot about what they had to say, how their lives looked right now, what affected them positively and negatively, what similarities and differences they shared. And slowly but surely I began to shift my view of autistic people from being a homogenous group from the pages of a textbook to being a group of people as varied and diverse in their abilities, pursuits, limitations, interests, and relationships as will be found in any group anywhere. All this took place before we had any indication of what skills my son would someday develop. In those early months and throughout the first year+ after diagnosis, Jason was nonverbal. He had frequent and powerful stims. He seemed very detached from us, and he had extreme sensory problems. He still faces many of those challenges, but as he grows we are able to say with certainty that he is not one of the most negatively affected by autism. Jason has no SIBs, is developing strong communication skills, and does not seem to deal with the anxiety issues I hear so commonly about from autistic folks.

So I have spent much time on this blog discussing autistic people - not just my son - in the context of cultural issues, being accepted in our society, government funding, transportation issues, affect on parenting styles, evidence based interventions, cause and cure issues, self-advocacy, and many other topics that I feel are important.

Having said all that, I recently received an email from a reader. I want to share excerpts of this email with you and to express that it is messages like this that make all the work that goes into this blog worthwhile. This was in response to a post I did last month when I indicated my focus on the blog will diminish due to other familial and professional responsibilities and changes in the online autism community:

Hi Steve,
I wanted to thank you again for all the support and encouragement you've
given me. It really means alot to me.
I like reading your blog very much.
The way that you care about you kids shows in your writing. You have a
background in studies that adds alot to what you have to offer.
You have shown an interest in autistic adults on your blog that is
unmatched by anyone I've seen ... We need people like you.
I have fewer responsibilities than you and will look things up for you as
just a friend and supporter if it will help give you more time and more to write
about. There are actually several subjects that you have posted about that are
a lot of interest to me and I would like to learn more about them. It would help
me learn and help me express myself better as well. Please continue to blog when
ever you can and let me know of any way I can be supportive.
I hope you and your family are doing well.

If I have made even a moderately positive impact on even one person, then it makes this whole undertaking much more gratifying.


Niksmom said...

Oh, Steve, you have made far more than a "moderately positive impact" on far more thanone person. Trust me!

Another Voice said...


I think you do make a difference, you express the point of view of a loving father. We need that. Life is not all about scientific matters, vaccine and furious debates, although they are important due to the amount of misinformation being sold. In my opinion it is mostly about the person in front of us right now.

You interact with your family in a way that I believe is good and proper. Keep that first and if there is some time left, write about your thoughts and feelings.

Camille said...

I think you're voice is a wonderful addition to the hub. I'm glad you are getting the kind of feedback that you are, it's encouraging.

VAB said...

At times I have been unsure as to whether the world is sane when it comes to autism. When I a read your blog, I am reassured that it is.

It's very nice to be reassured.

Marla Fauchier Baltes said...

What a wonderful letter. You should be very proud. I enjoy your blog too.