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Wednesday, April 3, 2013

Autism Acceptance Is Important, But Awareness Still Matters

In case you have not heart yet, April is Autism Awareness / Acceptance Month. This is a great opportunity for everyone connected with the autism community to share information, stories, and promote acceptance. We were fortunate enough to spend World Autism Awareness Day at one of the most aware and accepting places on the planet - the Autism Society of North Carolina's amazing Camp Royall. If you have never had the opportunity to go, it is worth the trip - first and foremost, it is a really fun place. Camp Royall is also very welcoming, and everyone there is wonderfully free of judgement.

There have been some excellent articles and blog posts written about acceptance (check out The Thinking Person's Guide to Autism for an ongoing series about acceptance, written by a variety of self-advocates and parents), but I think there can be a tendency among those who have lived in the thick of the autism world for a long time to say, "Yes, yes, we are aware already!" and to want to focus on what comes next, ie, acceptance and support. Jo Ashline wrote an excellent post about what it means to be aware and to live life with autism that will resonate with many parents.

However, it is important that we do not mistake awareness of the word "autism" with actual awareness and understanding of what it looks like in real life. There are tremendous strides yet to be made on all fronts, including educating parents, professionals, schools, extended families, and the general public. Although the rate of autism diagnosis has jumped dramatically in the U.S.,autism is still diagnosed later in minority children, including the African-American, Hispanic, and Asian communities. In addition, there is a growing belief that girls on the spectrum are often missed, as ASDs can look different in girls than boys. Twice-exceptional children may also have a harder time receiving an early diagnosis because their cognitive strengths often mask some of their challenges.

For many families, just getting to the point of a diagnosis is a challenge, because of lack of awareness among professionals. How many well-meaning pediatricians have reassured parents that their child cannot have autism because he or she makes eye contact? What about the speech-language pathologist who mistakes a large vocabulary for strong pragmatic language or the therapist who does not realize that a bright child can nonetheless struggle with the sequencing of daily life activities (speaking from personal experience)? One autism mom describes what autism looks like very nicely in her post "More Than Just Quirks" on the blog Beautifully Quirky.

Once an autism diagnosis has been made, it is indeed time to work on the process of acceptance, starting with the parents and immediate family. There are numerous books on the subject, but today I am going to focus on a trio of books written by North Carolina parents:

"Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger Syndrome" by Jennifer Cooke O'Toole: Written by an Aspie and mom of children on the spectrum, this book affirms that "different doesn't mean defective" and offers insight on how to connect with and educate your own "Asperkid".

"Journey with Julian" by Dwayne Ballen: There are comparatively few fathers blogging about autism, and Mr. Ballen's writing shares his journey toward acceptance of his son Julian's autism and his acceptance of Julian as a young man. I had the privilege of seeing him speak at the 2012 Autism Society of NC Annual Conference, and what really struck me was his perspective about the need for fathers to change their own pre-conceived ideas of what a son should be like, and coming to accept that their version of happiness may be unique and different than our own. It might be a good Father's Day gift for the autism dad in your life.

"A Friend's and Relative's Guide to Supporting the Family with Autism" by Ann Palmer: This book is a great one to share with friends, grandparents, and extended family members. It is full of practical tips about how loved ones can support the parents and child with ASD, and equally important, gently suggests what things not to do. This is a good book to share with grandparents and others who would like to help, but do not know how. After all, acceptance starts with understanding.

There are also many books written to help individuals on the spectrum come to greater self-awareness, understanding, and acceptance. Books also exist written especially for siblings, teachers, and Spanish-speakers. The Autism Society of North Carolina Bookstore is a great resource for books about autism awareness and acceptance.

Maybe the best way for us to promote autism acceptance is begin by including everyone in the discussion about awareness: parents, self-advocates, minority families, professionals, extended family members, and the broader community as a whole.

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