Comments for Journeys with Autism

Comment on The Road to a Diagnosis: Ben’s Story by Sharon

Sharon — Wed, 22 Feb 2012 05:25:49 +0000

Yes thank you Ben for sharing your story. I have been considering getting officially diagnosed as an adult. I was diagnosed as a child 53 years ago. (My Mother was told I would probably outgrow it, and to not try and socialize me. *sigh*. As you can imagine I did not outgrow it.) I also make excellent eye contact, and during one-on-one conversations appear utterly normal. But I am continually tripped up by my extreme sensory sensitivities. I primarily feel assaulted by noise and visual busyness, but every once in a while smell also assaults my senses. It is awful. Even my own emotions are often more than I can bear, I feel them so intensely.
I have found some bittersweet peace in knowing that it isn’t my fault. Wearing earplugs is now a way of life for me.
It is interesting to read the experience of others on the spectrum. Thanks for adding your experiences to this blog.

Comment on So What’s a Social Disability, Anyway? by Barbara

Barbara — Tue, 21 Feb 2012 22:06:08 +0000

Have you considered trying Skype Instant Messaging? I love this for real-time communication with a relative-in-law with ADD who finds that reading what I write rather than listening to me talk is much easier and more enjoyable. And typing a response that can be reworded if necessary reduces stress.

This method has advantages for me also. As an NT introvert (Meyers-Briggs INTP), I can keep in touch and also meet my need for solitude.

Comment on So What’s a Social Disability, Anyway? by Karen

Karen — Tue, 21 Feb 2012 21:43:34 +0000

I am guilty of loosing patience with communicating with my son who has Aspergers. I find it frustrating when he repeats questions that I have already answered 100 times. I try my best to be insightful and to understand his thought process and I think I do it better than anyone else in his life. This post makes me look at it a little differently. Perhaps I will pray for an ounce more of patience every day. I will be sharing this with my Facebook community.

Comment on So What’s a Social Disability, Anyway? by Jennifer G

Jennifer G — Tue, 21 Feb 2012 21:39:28 +0000

Well said. Most days I stink at understanding my husband. He stays aggravated with me alot. He suffers with the same loneliness. His coworkers become easily annoyed with him. Despite that, Jason goes to work everyday trying to find new ways to understand and play along with the Social BS. He comes home everyday exhausted.

Comment on So What’s a Social Disability, Anyway? by Jayn

Jayn — Tue, 21 Feb 2012 19:22:44 +0000

This ties into something that’s been on my mind lately, is when NTs talk about how hard it is to connect with someone on the spectrum. And no doubt it is. But why is it too much to ask them to put some extra effort into connecting with one (or several) people but not too much to ask us to put that same effort into our relationships with EVERYONE WE EVER MEET?!

Comment on So What’s a Social Disability, Anyway? by Brenda (mamabegood)

Brenda (mamabegood) — Tue, 21 Feb 2012 18:49:52 +0000

I see what you describe in my son exactly. And you express it so perfectly. It’s why I see myself as a communication partner, not as a teacher. And it’s why I see my purpose as educating the rest of the world – because THEY need to get comfortable with differences. And it’s why I always chafed at the speech therapists who said “act like you don’t know what he means. Make him say it.” ‘Cause I think that’s B.S. He’s expressing himself exactly HOW he can.

((virtual hugs, Rachel)) I’m so sorry that it takes its toll on you. I can only tell you that your writing will help so many.

Comment on So What’s a Social Disability, Anyway? by Shannon

Shannon — Tue, 21 Feb 2012 17:46:15 +0000

Rachel, thank you so much for sharing this amazing perspective

Comment on On Passing, Overcompensating, and Disability by Marcy M.

Marcy M. — Tue, 21 Feb 2012 16:58:18 +0000

Thank you, Rachel.

Comment on So What’s a Social Disability, Anyway? by Niksmom

Niksmom — Tue, 21 Feb 2012 16:57:09 +0000

Rachel, this is is such an incredible, thoughtful and insightful piece of writing. And such a vital perspective for those of us without any (recognized or defined) disabilities to take. I often remind myself that, while parenting my multiply-disabled child is extremely challenging at times, it is significantly harder for my son to be who he is and how he is in the world we live in. Your words help give voice, if you will, to my child without one. I know he struggles with some of the same things you mentioned, but he cannot tell me about them. Thank you for this wonderful gift. It may not be his exact take on the world, but it is far likely to be closer to it than I may ever come. Thank you.

Comment on So What’s a Social Disability, Anyway? by Jaimie Condon

Jaimie Condon — Tue, 21 Feb 2012 16:03:24 +0000

Thank you, great post.