Tag Archives: Thinking Person’s Guide to Autism

A Fantasy For Autistics

Last Monday Emma was profiled in A Slice of Life Series that the blog Thinking Person’s Guide to Autism has been running through the month of April.  This is the blog I wish had been around when Emma was first diagnosed, but that I am so grateful exists NOW, because it is by and for Autists and those who care for them.  Almost all the comments were from Autists who have blogs of their own and I recognized almost every single one of their names.  One of the people who reached out, Savannah, has a terrific blog called, Cracked Mirror in Shalott.  After she commented on this blog, I went to hers and read a powerful post, entitled Payment about teaching life skills to young Autistics.  The first sentence of her post is:  “I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.”

I will do her writing a disservice by trying to relate it here, so I urge anyone reading this to go to the link I’ve provided.  I commented on her post and inquired if it would be okay to ask for any thoughts on how to help Emma learn to wash and rinse her hair, which we’ve been working on for close to a year now, with on-again-off-again success.  In reply I received not only a lovely and thoughtful response from Savannah, but another from someone else, who had some terrific suggestions and also has a blog, Chavisory.  As I pondered the various responses I began to formulate a fantasy.  A fantasy of what I would love to see, what I hope I will live long enough to see, a vision of a different sort of world.  A world in which adult Autists were mentoring and helping younger Autists.  A world where adult Autists were involved in every aspect of society, education, government, policy.  I imagined a world where Autistic writers had columns in every major newszine, newspaper and magazine.  A world in which every single school had Autists teaching, devising curriculum, training and teaching neurotypicals how to best teach children on the spectrum and as I allowed this fantasy to develop I felt a surge of energy and excitement.  I literally felt like jumping up and down.  When Richard appeared, bleary-eyed and slowly reached for his cereal bowl, unable to contain my excitement any longer, I blurted out, “Can I tell you about my dream?”

“Can you tell me?” Richard asked, with a dazed expression.

“Yes.  Can I tell you?”  Unable to hold back any longer I launched into my fantasy, while Richard was still forming the words – “Yes, of course. Tell me.”

“Can you imagine what it would be like if adult Autists were writing books, teaching us, training us parents how we could best help our Autistic kids?  Can you imagine how amazing that would be?  Can you imagine how helpful that would be?  Autists have insights that we can’t possibly have, they understand better than anyone the various sensory issues, delays in motor skills that might be making it harder for children like Emma to learn how to do some of these things.  Can you imagine?  Can you imagine a world where schools were created and run for and by Autistics?”

And before Richard could reply I kept going. I was on a roll.  The excitement I felt just thinking about all of this was so great I couldn’t sit down.

“Think about it.  It would be so amazing, unlike anything we’ve ever experienced.”

As I considered this fantasy world I felt the stirrings of determination.  Why does this have to remain a fantasy?  Why can’t this be a reality?  What would have to happen for this to go from far-fetched fantasy to reality?   I’m sure others have had this thought.   What would need to happen?  What are the next steps?  I bet others have begun to make this a reality and if so, I’d love to know about them.

Thoughts?

For my latest piece in the Huffington Post – Running With Mermaids

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’

Emma is profiled on TPGA’s Slice of Life Series

Emma is featured on the blog – Thinking Person’s Guide to Autism today in their Slice of Life series that they’ve been running through the entire month of April.  For those unfamiliar with TGPA, it is a blog for and by autists and parents of autists.  On their website they write:  “Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

As Emma couldn’t answer many of the questions, I put together a scrapbook of photos, an audio clip of Emma singing, combined with her answers to the questions she did answer either verbally or through typing.  A couple of the questions I did my best to answer with my own thoughts, whether Emma would agree with them or not, or how she might have answered them were she able to, I do not know.

In preparing the various “answers” for the Slice of Life series I read many of the other profiles TPGA has run everyday this past month.  It was through reading those other profiles that I felt compelled to write the Fear post last Friday.  I fell into that hell of comparing Emma to others, adult autists and other autistic children profiled.   Each and every profile seemed to me to show someone far more “advanced” according to NT standards than Emma.  Because of those feelings, I felt all the more determined Emma should be represented, even if her answers were through other methods of responding than by the more traditional verbal answers.

Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.”

There are so many things people believe regarding autism that I would like to help dispel.  Here are a few of them:

Just because someone cannot speak, does NOT mean they have nothing to say.  

Just because a person cannot say, “I love you,” does not mean they do not.  

Just because a person is not able to express their feelings in ways neuro-typicals can recognize, does NOT mean they do not have them.

Just because someone does not look at you, does NOT mean they do not see you.

Just because someone appears not to hear you, does NOT mean they do not.

Just because a person has been diagnosed with autism does not mean they cannot learn.  It may take longer or it may be quicker than a neuro-typical child, but they can and do.

Assume competence.

Thinking Person’s Guide to Autism is the site I wish had existed when Emma was first diagnosed.  It is the blog I urge anyone who is autistic or with a child who is, to go to.

*And if you haven’t already done so, do vote for your favorite Top Autism Blogs, (you can vote for as many as you like.) I hope Emma’s Hope Book will be one of them!

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here