The road ahead

I'm encourage, drained, and apprehensive about the learning that I engaged in over the past two days at the first annual Asperger Manitoba conference. It was encouraging to learn about research projects that are going on, and to get some ideas about our next steps in building on G's strengths and developing his areas of difficulty. It gave me hope to see many young men who were only diagnosed in their teens and early twenties celebrating their uniqueness and their gifts. It was discouraging to hear that diagnosis is still happening much too late, and that there are so few services and supports for these kids and their families.

There is something that is so healing about being able to spend time with parents who share similar experiences. It was so great to have our child development worker there...to chat with her in between sessions. She has been such a gift to me, and to our family. As a mom with a child with AS, there are times when you just need to have people in your life who get it...who live it.

So, now that I've learned more about potential future outcomes, more about the importance of comprehensive assessment, more about the importance of appropriate (assessment and research based) interventions across settings, and more about the AS perspective, I had a new road to embark on... it's time for me to explore more assessment so we can have a complete profile of G's strengths and difficulties, it's time to learn what specific interventions can help him to build on his strengths to address his challenges, and it's time to become a political advocate.

A little more on political advocay... kids with AS are being underdiagnosed, misdiagnosed, and being diagnosed much too late. There need to be more effective screening tools. There needs to be more awareness within the medical community about this profile. As is the case with autism, the research says that appropriate, research-based, cross-disciplinary EARLY intervention makes all the difference in terms of positive outcomes later in life. There also needs to be more support for kids and families who receive this diagnosis. All too often, families get a diagnosis, a little advice, and then are left to do their best. The system is operating in a reactive manner right now...diagnosing, and then providing very limited supports or interventions until further problems arise (and they will arise without intervention, and even with intervention). This is not acceptable! Our children deserve more from us!

So, if this issue matters to you.... please call your MLA, send an e-mail or a letter to your MLA, do the same with your MP, and talk to people. If everyone who reads this post can take one minute to do one action of advocacy, and can encourage another person who cares to do the same, we can start to make a difference.