In the last 13 years since I decided to put on a second hat if you will from being a parent of a child with Autism, to advocating for those with the diagnosis, I have seen that describing “Autism” in a few words can be a hard task. What I have learned through my personal and professional journey is that Autism can be as variable as the individuals that have the diagnosis. While sharing a few similarities—namely challenges in communication and social interaction—these individuals with Autism are first and foremost an individual to be respected. As a wonderful Pennsylvanian self-advocate, Bill Stillman, says when working with an individual with Autism, one must always “presume intelligence”.
My journey has shown me that Autism can have savants like Temple Grandin or it can affect the individual in such a way that they may reach adulthood and even old age without ever uttering a word or being able to live independent lives. This huge difference among those living with Autism, means that it is an issue that is highly politicized and very personal and emotional. Many parents speak about having to go through a “grieving” process where they can learn to adjust and cope with having received the diagnosis for their child—often because those health professionals around them have given them a grim prognosis of their child’s future. Regardless of where your loved one with Autism falls on the vast spectrum, it is absolutely essential that you ask questions, and research and act as early as possible to get your child or children the services they need to be the best them they can be. For some that means a few adjustments here and there, for others, it means countless hours of therapies, interventions and perhaps medical attention for co-morbid conditions that can accompany Autism.
Whatever the case is that brought you to our Foundation’s website, I hope that you will find it a valuable resource in your journey to help your loved one on the spectrum or yourself; to become involved in your community or to simply get a better understanding about a condition that now affects 1 in 88 children in the US alone, and 1 in 54 boys. It is expected that these numbers will continue to increase in the coming years. There are many theories that abound as to the reasons why the increases may be happening. I urge us as a community to fight those personal fights because they are important, but to remember that in the end what matters most is that beautiful soul that we were blessed with who needs us to light the way and be an effective piece of the puzzle. For that, dear friends, we need to work together and focus on the individual living now with Autism. I look forward to having you join us in this journey!
With all my love,