Autism Women's Network and the host of the AWN Radio Show. She's a mom to four children -- one of whom has Asperger's -- and she is a tireless advocate for women and children, particularly those whose lives have been touched by domestic violence. She is also an adult who has Asperger's Syndrome.
TPGA contributor and BlogHer contributing editor Mir Kamin was lucky enough to spend some time chatting with Sharon for Autism Awareness Month.
Can you tell me about how/when you were diagnosed with Asperger's?
I always like to remind people that even though I was diagnosed as an adult, it didn't mean I became autistic as an adult. But it explains so much, everything really, so well, now that I know.
My 17-year-old son was diagnosed with Asperger's in kindergarten. His therapist later said she knew about me right from intake. She could just tell because of the way I answered questions and by the way I related to him. She said that only parents on the spectrum are like that; it's very different with a neurotypical parent. She saw an obvious difference. We relate to our children in a very unique way.
But I wasn't her client or her patient, so she didn't feel it was necessary to say anything to me. Several years later, she was doing sibling and family therapy, and so we were really engaged with her, and she knew our family very well, and finally she thought she'd mention to me that maybe I should be assessed. I was having a hard time socializing and at work. She posed a question to me about what I thought about seeing how autism runs in the family. I said "Yeah, I think there's some genetic components there." She said "Really?" and she just kept looking at me. I said "there are a few people in my family who are 'spectrumy.'"
She asked if I thought about being assessed, and I laughed! I was 43, she said "Your son is 13, that's a huge age difference, and you're female and he's male ... have you ever thought about talking to your parents and asking them some questions?" I said I'd never thought of it, but I didn't see it at all. She said "I want you to take this whole conversation about communication and socialization and write it down and think about it."
I went home and wrote it all down, and it was so amazing. I was having so many issues, and I was like "Oh my gosh, I should probably have this checked out." But I wasn't ready, I was still in shock. Learning to adapt, learning to pretend; you laugh when other people do, you figure everyone does that.
I waited about six months to get assessed. I would say, "Well, I'm thinking about it, I'm talking to family, I'm not quite there yet." It took a long time to wrap my brain around it. It seemed so foreign. But then when I started realizing this is exactly what I'm like ... there's such a distinct difference between women and men with Asperger's ... we're often diagnosed in adulthood. We fly under the radar. I don't want to see a lot of people going through what I went through.
How did your parents react when you started talking about this with them?
One day I asked my mom, "What would you do if I said there was a psychologist who said I should see if I'm also on the spectrum like [my son]?" And she said it would sure explain a lot of things. She thought I had some major issues with my communication skills. I wasn't anti-social, but I didn't have as much of a desire to socialize as my siblings. She said there were a lot of issues as a parent ... and when my son was diagnosed she'd always thought there was something there, but told me she didn't think it was her place to say so.
We spoke for two hours. She reminded me of things where I went "That's exactly like things my son has done!" As a kid, I would scream about socks, because the seams were bugging me. Sounds sometimes set me off. I had issues with foods and taste -- gagging on certain things. Never with my siblings, always with me. I'd forgotten so much of that ... well, not forgotten, but just never thought about it. It's just who I am. I said to her, "My siblings never had any of that?" She got choked up and said, "No, and no one would ever listen to me." She told me that she always had a lot of confidence in me, but that she worried the most about me, too.
My mother has been someone who was definitely like, "Oh my gosh, it makes so much sense!" My mother was raising me in a time when there wasn't an available diagnosis. You just didn't hear about giving kids support in their family if they were doing good in school. It was just a "family situation." But you've got family looking at you like "What's wrong?" My mother knew there was something different, we just never knew exactly what it was.
What has it been like, for you, to have a diagnosis now? Is it positive or negative? Do you regret not knowing sooner?
I grew up in a time when adults weren't afraid to hold children accountable. My parents had expectations. They held me to the same standards, and I think in the long run that benefited me.
I still would rather they'd known; I think it would've been easier. Flying under the radar for so many years ... I went through a lot. Communication means everything, and I try to tell people that just because we've mastered speaking doesn't mean we've mastered language. Those of us with Asperger's have a huge deficit. We often have an invisible disability. We don't appear to have any challenge going on, but I panic inside when I can't figure out what someone's thinking. No one can see that, so they think I'm just fine. The invisible part of it is the huge challenge.
It's been very empowering to accept that I do process information differently than the majority of the world. Even though it's been kind of a vacillating journey, for the most part it's been very positive. It's answered so many questions. It helped me to set up the supports I need to make sure I'm understanding everyone. By the time you hit your 40s you've learned how to cope ... but [those of us diagnosed later in life] went through the school of hard knocks to get there.
You have four children, one of whom has Asperger's. As an Aspie parenting an Aspie: Does that make it harder or easier?
I tend to relate to and "get" him on a level I don't get my other kids. Neurotypical teens -- oh my goodness! I couldn't relate; I never wanted to go to the mall and hang out with my friends. "Why do you want to do that?" There's not that gap there with my Aspie son. My parenting comes more naturally when it comes to him. And he gets me. My oldest kids always used to tease, "Oh, you were perfect, you never got in trouble." They're right, but only because I never went out or had a chance to get in trouble.
However, my son on the spectrum also comes with an extra set of stuff going on. There's more attention that needs to be paid to him on a different level. There's different things I need to study and read about so that I can understand what he's going through. I didn't have to deal with male adolescence! So it goes both ways. He has a higher level of needs, and that can be more challenging.
Talk to me a little bit about the differences between male and female Aspies.
The female brain is different than the male brain. We tend to hold our peers to a higher standard, girls do. We're not as forgiving. We expect people to go with the flow. Also, remember that girls mature earlier. Dr. Attwood believes females on the spectrum are completely psychic. He's said, "I remind them to trust their guts, because they misunderstand language and then doubt their guts." It's instinct, it's not voodoo. So with all of that, girls on the spectrum are much more likely to "fly under the radar." Some of it is instinct and some of it is that we face more pressure to conform.
It's natural as a parent to parent boys and girls differently -- and they are different. The greater the understanding of the entire spectrum, the more we can help everyone, male and female.
What do you wish every parent with a child on the spectrum could know?
I tell parents to be really in tune with their kids. People with Asperger's are several years behind emotionally. You have to remember that. Their emotional capabilities are at a much younger age level. It doesn't look quite right to society.
So many things that our kids do look like they're being "bad" and 99 percent of the time it's something sensory. I would always go up and ask, "Why did you take that balloon away from that other little boy?" rather than assuming he was being naughty. And he would say, "That balloon is going to pop, and when it does it will make me feel sick and give me a headache." See, he wasn't being mean, he was scared of what he thought was going to happen. So then I say "Okay, but we need to go explain that. You can't just take it."
Remember that as a parent you should always guide your child by using their strengths. Advocate in communities and schools for people to teach to them with their strengths, not their weaknesses. Approach them with a view of their strengths instead of looking to accommodate weakness. People usually rise to the occasion. Children most often do. Remind yourself of that every day. I think it changes the dynamic.
I would like to see IEPs not centered around deficits and challenges. Acknowledge them, yes, but also acknowledge strengths, and center the plan around the strengths and then just support the challenges. Imagine what that would look like.
How do you feel about the proposed elimination of the Asperger's diagnosis from the DSM?
I see both sides, honestly. I'm very mixed. I've seen benefits and deficits coming from this on both sides. People with Asperger's -- children and adults -- have lack of services because insurance companies and Medicaid do not recognize Asperger's as being something they will pay for, because they're not "autistic," they have Asperger's. That's been a challenge, and people with Asperger's have been denied a lot.
But on the other side, I feel like lumping us together says it's not a spectrum. I would like to see them keep it in there but acknowledge it's on the spectrum in a way to where it gets benefits. They tried to make them too separate. I'm good with a change if it still explains how Asperger's presents. My only fear ... I don't want to see people with Asperger's fall off from support altogether. It could be a huge upheaval. I'm kind of okay with how it's always been.
Mostly, I would love the DSM to include it in a way so that insurance can't be denied. I worry about the adults if the changes come through. I worry that adult services for Asperger's will be decreased or eliminated, and there are just as many autistic adults as kids.
What does Autism Awareness mean to you?
It doesn't mean just being out in our community and talking about what the DSM says. It isn't just talking about what it is, it's talking about the personal experiences of autism -- how it impacts families, education, what are the supports needed for children and adults. It means understanding the differences between males and females on the spectrum, because it will help everyone understand the spectrum as a whole. It's not just saying "It's Autism Awareness Month!" and that's it. Not just saying those buzzwords that get thrown around in April. It's talking about the hard stuff. And what are we going to do about it. What are we asking our educators to do for our children? What are we asking of our communities?
This interview was originally published at BlogHer.com