Autism Interview #71: Marie on Embracing and Supporting Autism

Marie is a published poet, writer, translator, puzzler, and artist who lives on the South Coast of Australia with her handsome cockatiel. She advocates for individuals on the spectrum, and believes she owes her creativity to having Asperger’s. This week she shared some of her advocacy work and how she finds ease in social situations.

On your website, you mention that you enjoy spending time alone. When you are around other people and comfortable, what does your environment look like? Where are you, and what do other people do (or not do) to make you feel at ease?

I used to go to classical music concerts in the past (when my health was better) and met some people there. We mainly only talked during the break (or just before or after the concert), and it was usually about music. I love to talk about my obsessions, like many other autistic people I think, and classical music is one of them.

I also liked the University because I could do my work in peace in the library, and my teachers understood me (even before I was diagnosed with autism!). I don’t like to be forced to do things like talking in public.

In general I feel uncomfortable with people for the following reasons:

  • If I don’t tell them that I am autistic, they think I am “weird” because of my interests, maybe the way I speak, “stimming”, sensory overload etc. ;
  • If I tell them that I am autistic they treat me in a very unnatural way (maybe they don’t realize I notice?);
  • If I tell or show them what I do, they say that I am not autistic (this is not uncommon either, many of us have been told “You are not autistic!” mainly because of the misconceptions neurotypical people have about autism).

Can you tell me about your foundation you are starting to help autistic people who don’t have family and friends to support them? What will the foundation do and how were you inspired to start it?

The foundation has not been started yet as it is part of my last will. It will be my legacy to autistic people so to speak. I had this idea because I know how difficult it is to be autistic and without any support from family or friends. I would like my foundation to really care for these people, and, above all, give them friendship and warmth. Disability support groups can still offer help in some cases, but we need more than that. We need to have the feeling that somebody really cares and loves us for who we are. To be considered disabled and only to get help from disability support groups is not the best feeling because there is no real love or friendship in this kind of support (at least in most cases).

Additionally, we are different, not disabled. As Temple Grandin said a long time ago, we are different, not less. Years ago, I was basically forced by a social worker to apply to be part of an organization that provided friends to people with a mental illness (somebody to go out with etc.). I definitely don’t think autism is a mental illness in the first place, but I wanted to show some good will… I had to fill in a form with my interests etc., and after 5 years (yes, years!) I was told that they were unable to find a “match”. While I didn’t really care because I didn’t want to do it in the first place, I would like my foundation to be better than that and never to give anybody the feeling they are unwanted.

Where do you use your translating skills? What type of work do you do in this area? What does it feel like to bridge communication in this way?

My favourite fields have always been biology and medicine, or science in general. I think it is really a good feeling to bridge communication in this way, particularly for autistic people, who are usually more challenged in normal communication situations, but are then able to help others communicate through their translation skills.

What do you enjoy most about poetry?

Honesty. Being able to express what cannot be expressed in normal conversation. The ability to give other people the chance to understand more about me or what I would like to say without having to explain everything explicitly. Not everyone is perceptive to poetry, but some are. We don’t have to change the whole world with what we do. It is enough to touch and change a few people, or at least make them understand more.

What mistakes do neurotypical autism advocates make?

I assume all neurotypical autism advocates are different, just like all autistic people are different (they say if you have met an autistic person, you have met one autistic person, and it is very true).

The most common mistake I have noticed is sometimes the inability to put theory into practice. Sometimes, for example, they “throw” hints at us or also don’t understand that we take what they say literally (even if they know, they seem to forget in practical life), so for example if they say something will happen “next week,” we really expect it to happen next week. Sometimes I think they don’t quite understand us when we are blunt either, even if they “know” many of us can be blunt in their honesty. So basically sometimes they just treat us like normal people. These are some of the most common mistakes I have noticed or I have heard about (from other autistic people).

Last but not least, support doesn’t necessarily mean helping autistic people to be more integrated or like everybody else. Sometimes we just want to be helped to be accepted for what we are. Like everybody else, there are things we can do and things we can’t do.

Let’s focus on the positive, that is to say, what we can do. Neurotypicals wouldn’t like to be constantly reminded of what they cannot do either. Self-confidence is very important, and it certainly doesn’t boost the self-confidence of autistic people to constantly be told that they should be something or someone else. There is a wonderful comparison I read in one of the blog posts of the Autism Hall of Fame (the comparison originally comes from Tom Boyce), comparing normal people to dandelions and people with a brain difference (including autistic people) to orchids. Orchids don’t thrive everywhere, but when they are in the right environment, they thrive very well and can be really beautiful. Advocates should help autistic people to thrive in the right environment.

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