On living with autism: ‘I am comfortable with who I am’

[Guest guest]

On living with autism: ‘I am comfortable with who I am’

By kirsten stewart

The Salt Lake Tribune

Published: October 8, 2010 11:10AM

Updated: October 8, 2010 01:27PM

Dora Raymaker, above, of Portland, Ore., offers an inside look at living with

autism. She is a member of the Oregon Commission on Autism Spectrum Disorder,

co-director of the Academic Autistic Spectrum Partnership in Research and

Education (www.aaspire.org) and sits on the board of directors of the Autistic

Self Advocacy Network (autisticadvocacy.org).

Can you speak to the importance of relationships in your life?

My relationships are the reason why I’m alive. That is not hyperbole. I’ve

been very fortunate in that I’ve always had good people around me who care

about me and who have been able to support me (and I them) and keep me safe and

fed.

—

What about autism makes it difficult to maintain relationships?

The biggest difficulty I have is that it can be really hard for me to remember

to, or figure out how to, contact people … . One way I deal with this is to

make dates with people far in advance and get the dates solidly in my schedule.

Every time I meet a new person, I learn a whole new language (and they need to

learn at least a small amount of Dora-ese). This can be slow and a lot of work

for both of us, but I also think it results in relationships that are richer and

more honest and committed. It is hard to enter into a trivial or throw-away

relationship with me.

—

There’s a perception that people with autism can’t internalize emotions and

can’t empathize with others.

Just because someone may not express emotions in a way that is recognizable to

others does not mean they are not feeling them. I often feel things too deeply

or have too much empathy and have to run away, not because I am callous, but

because I feel so strongly it causes my brain to shut down or freak out.

The notion that we don’t have feelings frees up people to commit atrocities

against us without accountability. A person involved with my local school system

once told me they heard a well-known educational speaker tell a room full of

autism specialists not to worry about autistic students being bullied because

the autistic students don’t have any feelings.

—

How do you help friends and family members empathize with you?

I love that it’s recognized that others have just as much of a responsibility

to understand us as we have to understand them.

It took me a long time to realize I did need to explain my experience of the

world to others in order to facilitate clear communication and understanding.

Non-autistic people typically assume that I experience the world in some way

similar to them, which leads to a lot of misunderstandings and at times

dangerous situations, and I suppose I am no different.

I am still in the process of learning what is different and how to communicate

that difference. (How would you generally explain your experience of being

non-autistic?)

I am comfortable with who I am and my experience is no more alien or unpleasant

to me anymore than anyone else’s experience of the world is alien or

unpleasant to them.

© 2010 The Salt Lake Tribune