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Share your experiences with autism.
April 2nd is World Autism Awareness Day. The big thing about autism is that not many people truly understand what it’s like to have it, and sometimes it can be frustrating when people assume the worst about you when they’re unaware that you have autism, this coming from personal experience as an autistic man myself. So for this challenge I would like all of us to come together and share our personal experiences with autism, whether you are on the autism spectrum yourself or you know a family member or friend that is of the spectrum. When did you learn about the diagnosis? What struggles have you encountered? How did you cope? Has any family or friends been able to help? What end of the spectrum are you/they in? Another thing about autism is that people with autism usually tend to have special interests, so share those special interests with everyone here. Maybe they’re really cool. I understand that this may be a difficult subject to write about, trust me I know from personal experience, but I believe that this can help spread awareness here on Prose, and it will help bring us together as a community. If there are some that feel that this is too personal and do not wish to join, that's alright. I completely understand. You are not being forced to partake, it is your choice. Fill free to tag me and as many people on Prose as you wish if you're willing to enter, that way we can help us understand what autism is really about. Thank you.
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crayzed

The entire world is Neurodiverse

My daughter was born with a rare genetic syndrome called Cornelia de Lange Syndrome.

She is considered less effected because she doesn't have any health issues, limb differences and is quite tall and talkative compared to many others with CdLS.

When she was in her teens the geneticist wondered if perhaps she should be given a dual diagnosis of Autism. We never had her officially diagnosed but she definitely had similarities with some other Autistics and we attended the same therapy sessions or programs as many of her friends with Autism.

As she got older, I found it harder for her to develop and nurture friendships. The "neurotypical" kids were now involved in more mature, hormone driven adventures. They didn't share my girls interests anymore. Nor did she share theirs. But, she still wanted and deserved the social interactions and opportunities that her sisters had.

I found it frustrating and disappointing trying to arrange play dates or activities with other kids in her Spec. Ed class or on her Special Olympics Teams. Families were either, too tired, too busy, too scared or too unaware of the importance of friendships.

And so...

I started a group for Special Needs youth and young adults. I planned events and outings that would appeal to a wide variety of her friends. Activities that could be modified to suit all abilities, if needed. Things like Bowling, Cooking Classes, Dances and meet ups. I recruited some high school and college students who wanted to come out and help host the events. Who wanted to help make our time together more inclusive, social and safe. For anyone that was independent enough to stay on their own, they were welcome to. For others, they could bring a support worker along.

It started out with 5 or 6 friends and has grown into a network of over 200 families.

Of coarse we have a wide variety of disabilities or differences in our group but a large number of our members are Autistic.

It's through running this group that I have discoverd how truly neurodiverse we all are.

What I have learned is:

Autism (as with all "disorders", syndromes, diagnosis) does not present itself in any "typical" manner. Just because you know one Autistic, does not mean you know anything about another. (as with, men, women, Hispanics, Catholics, diabetics etc.)

The terms "high functioning" and "low functioning" are misleading and adverse. I am high functioning compared to what?

There are a lot of differing opinions in the Autistic community on what is acceptable or helpful therapy, treatment, wording etc. They are all right because we are all different and what works for one, doesn't work for another. How I feel or see things, is different than how you do.

There needs to be a TON more understanding and acceptance of Autism and ALL neuro-differences.

When some people hear Autistic they think, RainMan, Temple Grandin or Savant. Or they may think of someone who Doesn't have eye contact or stims a lot. Autism is all of these things or and none of these things and more than these things. Autism is PEOPLE. People who are quiet, people who are loud. People who are funny or shy or successful or rich or poor.

Autism is my daughter, my step sister and her husband and their daughter. Autism is my friend, my neighbor, my massage therapist and the cashier at my local store.

#TheSpecialFriendsNetwork

#MyHeart