That One Thing
I’m very big on sharing our stories. I think that by doing so, we allow others to have a better understanding of what Autism means to us, both collectively and on an individual level.
I love getting input from other parents touched by Autism as well as adults with Autism.
One of the things that I have been wondering, but have never gotten around to asking is this:
If you could make someone in your life understand, and I mean truly understand one thing about Autism and its impact on your life or the life of your family, what would that one thing be?
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Father to 3 boys with #Autism, 1 with Fragile Health. Award winning blogger, techy and advocate. #AutismDad @GuardianLocate
This is a tough one – to pick one thing. But right now, where I am in my life, I would have to say in my experience it is the tendency of those in the “autism community” to not understand life with severe autism, and to say things that make those of us living with it to feel like second class citizens, even within the group of people that has the best chance of understanding us. Everyone understands in their head that it is the autism spectrum and that “if you know one person with autism – you know one person with autism” but in practice they often make statements about autism or what to do for autism like the higher functioning autism is all that there is. I wish I had time to think of examples to share. All I ask is everyone stop and think about what they are saying before they make claims or offer advice – who is you audience? Do you really know what life is like for them. Thanks for the time on the soap box
I think if I had to make most of our family outside the home understand about autism, it would be how hard it really is. How devastating it can be to not get invited to, or not be able to go to some family events. To not be able to go to the movies as a family day, or be invited to game night at a friends house, because of the behavioral issues. How absolutely alone one can feel because “family support” wanes as the years move up, and the autism symptoms are more prominent. Although all these things are true, I thank God every day for my husband, and the friends I have, for what support they have provided