Q&A with Dave Spicer, Self-Advocate, Father, and Conference Speaker

Dave Spicer was diagnosed with autism in 1994 at age 46, shortly after his son’s diagnosis. Since then, Spicer says, he has been examining his life with moderate diligence. He often speaks and writes about the experience of living with autism and serves on the Autism Society of North Carolina’s Board of Directors.

Spicer will be our final speaker at this year’s annual conference, Autism: Planning for Success in Charlotte on February 22. His presentation is titled “Living Your Life: Defining Success on Your Own Terms.” Here he shares some of what he has learned.

DaveSpicerWhen and how did you come to learn you have autism?

My autism diagnosis came in early 1994 when I was 46, several months after my son’s diagnosis at age 8. During Andrew’s TEACCH evaluation, a great deal of what they were seeing in him and explaining to us parents closely matched my own life experience. My own evaluation and diagnosis came as quite a relief – my life, past and present, began making much more sense then.

What are some of the challenges you face because of autism?

The primary one is that my perceptions of situations, and my responses to them, are sometimes very different from those of most other people. Some of these differences occur at the sensory-input level (such as tactile and auditory defensiveness), some at the input-processing level (such as facial recognition), and some at higher levels (evaluating nonverbal communication, understanding nuanced social situations, dealing with others’ imprecision or vacillation).

While I can compensate more or less successfully for these much of the time, another challenge is that I tend to decompensate under stress. My “functioning level” is far from constant, and is dependent on a lot of behind-the-scenes effort which others are generally unaware of. This compensation is a lot of work – and success at it is sometimes rewarded by others’ raising their expectations beyond what I can handle. So in some circumstances, I can seem to be doing okay for a while, but then fall apart pretty quickly for no apparent-to-others reason.

How have you overcome some of those challenges?

Well, in the “defeat or conquer” sense of overcome, I have not. What I have is the daily opportunity to engage life on its terms and find a way to work with or around my built-in challenges when they interfere with my enjoyment and sense of fulfillment with life (or on difficult days, my ability to just cope and get through it).

In more practical terms, I work hard to do what I can when I can, try to take care of myself by managing fatigue and stress, and try to remember to ask for help when I need it.

Do you have positive characteristics that you attribute to autism, and if so, what are they?

Many aspects of my neurological configuration can be advantageous under the right circumstances. For instance, I seem able to recognize parallel situations in widely different areas, which can help me both understand and explain the experience of living with autism. An example: a vehicle specially designed for drag racing will do terribly on a road course, and might be completely unusable in ordinary traffic. Those of us with autism may well be a lot less “general purpose” in dealing with life situations than most other people.

The other side of this, of course, is that these same aspects of my nature can really get in the way when they’re unhelpful or inappropriate – or when they’re the only tool I have to deal with a given situation at all. This is where accommodations can make all the difference, be it others’ willingness to put up with some quirks or my remembering to bring earplugs to noisy settings.

What advice can you provide families on how best to help their children with autism succeed?

The words I would suggest are understanding and support. Especially in my earlier years, the most distress I felt was from not understanding what was happening around me and not feeling understood when I was having trouble dealing with something. I often just could not do what was expected of me, and no one knew why. This can be very isolating, for the family as well as the autistic individual.

Suppose instead there was an atmosphere of seeking to learn more about each other and from each other, and seeking a way to journey through life together that works for everyone. Suppose there were allies – others in the same situation – and that you could help support each other and share what you have worked so hard to learn and understand… and suppose that children on the autism spectrum had those same resources available, and could even become each others’ allies. Wouldn’t this improve everyone’s quality of life? And isn’t that as good a measure of success as any?

What advice would you share with those who have autism?

I believe these things – see if believing them helps you: Not everyone will listen to me, but enough important people will. Not everyone will understand me, but enough important people will. Not everyone will want to help me, but enough important people will. Not every door will open for me, but enough important ones will. Not all of my wants will be met, but enough of my important needs will. Not every happy ending will come, but enough of the important ones will. Not every day will be wonderful, but there is always the chance that today will.

How can self-advocates better connect with each other and support one another?

By being given support, and opportunities to connect. A recent ASNC Board meeting was held at IGNITE in Davidson, described as “a peer-to-peer community center.” Before the meeting started, I was sitting with tears in my eyes thinking about how cool, and how wonderful, the place was. I felt a very strong sense of affirmation – that there was a place for me, that it was okay to be me, that the path led forward. There are many ways and many settings in which that message can be conveyed, given the opportunity.

How do you think life has changed for those with autism, as far as awareness, acceptance, etc.?

Here in Asheville where I live, there is sometimes morning fog. It’s hard to see much of anything for a while, but then the fog starts to dissipate in the sunlight. We can see more clearly, we can see farther, we can appreciate what has been there all the time… and we can see that we are not alone. There are a bunch of others like us and support and understanding is growing, just as we are continuing to grow inside ourselves. The change over the years seems like that to me.

What do you see as the future for people with autism?

My hope is that we will be seen as a societal asset, as well as a population sometimes needing extra help. In a number of areas such as sensory environment, clarity of instruction, and perhaps even reasonableness of behavior, we can serve as the “canary in the coal mine” to help indicate where improvements could be made that would benefit everyone. Even our occasional distress can help nonautistic folks reevaluate what is really meaningful and important in both daily life and its overall path.

We can help. We can work together. We can grow together. We can serve others together. Let’s do this!

For more information about the Autism Society of North Carolina’s annual conference February 21-22, please click here. Early-bird rates for registration and hotel stays are available through January 31.

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2 Responses

  1. Hi Dave, I appreciated your insights, honest and hopeful perspective. I didn’t attend the conference but wanted to ask if you would share your presentation with me. Thank you. Joanna

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