Musings of a Marfan Mom

Guest Post from Neo

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April is Autism Awareness Month. Like last year, I’m featuring a couple of guest posters to share their experiences with autism. Today I’m pleased to have my friend Neo from The Aspie Side of Life blogging.

Did you know that April is Autism Awareness month? Did you know that the blue lights are spreading autism awareness? Yes, really, they are. Go up and ask the blue light bulb some questions about autism and see what it says. It will tell you all about autism. Go on, ask it….

What??!!! It didn’t tell you anything? Huh, that is so odd… Oh wait, it is just a lightbulb! Silly me!

I tried to take a step back and see it from the perspective of maybe the lightbulb might show support to someone. For example if the idea was that a neighbor lit a blue light to say I accept your child as is and they are welcome to play here. Or maybe the school lit a blue light bulb as a promise that my child could go there and be understood and accepted for who he is. If my employer lit a blue light bulb and understood that yes I fidget and blurt out inappropriate things sometimes. Maybe if they took “eye contact” off of the performance evaluation. But none of that is the point of it.

According to Autism Speaks’ website it is “an effort to shine a bright light on autism as a growing public health crisis”. “Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.”

Wow, okay deep breath, as an aspie the words “health crisis” are a bit much and cure is just, well it is really bothersome to me that the biggest organization is still discussing how we need a cure. I suppose that makes it even harder for me to buy into this whole “Light it up Blue” campaign. I will agree we still need awareness in the community but I don’t see how light bulbs accomplish that.

On April 2, World Autism Day, a co-worker who had received an email from Autism Speaks asked me if I wanted her to go buy a blue light. I started to politely decline. For the record, if she had handed me a blue light bulb or worn a blue shirt I would have politely thanked her because it would have clearly been an act of kindness and with all good intentions to show support. However before I could even start to explain my point was proven before I even had to figure out the correct way to explain it. My longterm friend and co worker said “What the hell are blue light bulbs for?” I said “that is precisely my issue.” Either you know about the campaign and therefore don’t need a lightbulb or if you see a blue lighbulb you won’t necessarily think Autism.” My friend then said that she would get a ribbon but not a lightbulb. Right, sometimes originality doesn’t pay really!

Although my friend had absolutely no idea what a blue light bulb was for she is certainly aware of autism. I appreciate that she has been my friend for years and accepts me quirks and all, more importantly she accepts my son. She has traveled with us (for a work conference) and has seen him at his worst. She has understood when he has become overwhelmed and helped him when he has needed it the most. She has been his friend and brought her dog over to visit when he has needed a pick me up. She certainly did not need a blue lightbulb to tell her about autism!

What we need are campaigns that spread the truth about Autism. Autism has wonderful qualities but the things that make it wonderful and unique are also the things that make us feel overwhelmed at times. There are many times that I do not want to talk to people because the noise in my head is too much. I am too busy listening to what is going on in my head. (It is a different world, imagery and thoughts, sometimes music, not like voices telling me to do things.) The outside voices are distracting me from my own thoughts. My poor husband has been told more than once to “stop talking”. I try not to say that too often because I know I don’t like it when my son tells me to stop talking. I am not high functioning just because I learned to speak out loud the Neurotypical language. It only means that I learned to step away from my inner world to speak the Neurotypical language. The non verbal autistic is functioning and should be given their opportunity to speak as well. Even if they do not speak the Neurotyical language out loud. Many non-verbal autistics have their own way of interacting and communicating.

Everyone says that every autistic is different. Well sure all neurotypicals are different from each other too. But at the core all autistics share certain traits or blending of traits. In my experiences we understand each other and we desperately try to understand Neurotypicals. Please take the time to try and understand us as well.

Please spend this month making people aware of what autism really is. Please don’t show pictures of autistics “lost in their worlds” and say how horrible it is. Listen to the autistics about how they say they feel. Listen when they tell you that yes maybe they are able to function now but it has been a long road to get to where they are. Don’t dismiss them as being too “high functioning” to understand how to help your child. Listen to when they tell you they still struggle every day. Listen and accept them as human beings. Treat them as you would want your autistic child to be treated when they begin to advocate for themselves.

And please don’t tell us how we should all buy blue light bulbs and this is somehow making a difference. We need acceptance, respect and the services and accommodations that we all desperately need to help us navigate in this world. If these lightbulbs somehow help you feel better I certainly won’t stop you because that is your choice. But personally I am not sure how a blue light bulb would help my kid but depending on his mood he may try to eat it. He really loves the taste of metal! (and yes I have tried supplements, no they don’t work, he would rather chew on metal.)

“Neo” is a self diagnosed Aspie, living on this planet as NT (neurotypical) Nurse/Lawyer. She blogs over on The Aspie Side of Life. The blog is primarily about the adventures with her son, whom she refers to as Sheldon. He is a adolescent aspie also diagnosed with ADHD, Anxiety, and Depression.

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5 Comments

  1. Pingback: Talking about Blue Light Bulbs – The Aspie Side of Life

  2. “What we need are campaigns that spread the truth about Autism. Autism has wonderful qualities but the things that make it wonderful and unique are also the things that make us feel overwhelmed at times. ”

    This sums up my feelings exactly. I have a friend with a non-verbal ASD son who raises funds for Autism Speaks. I feel so torn, because she wants her son to talk and be cured. Yet, I don’t want to be cured, or my son, father or husband to be cured. I want to learn how to help myself adjust to a very exciting stimuating world. Acceptance and understanding are what every autistic person longs for.

    Thank you for the lovely post.

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  3. Thank you for hosting this post by Neo. Neo says a lot of the things that cause me discomfort about Autism Awareness Day/Month. The connection to Autism Speaks and the politics of curism don’t lead to more services for families like mine. The awareness we need is that early intervention services are not available to many families. A light bulb does not cause any one to write a provincial politician to ask for reduced wait lists. The attention on blue reminds me of the pinkwashing that has come in for criticism around breast cancer. All in all, there is much to make some of us uncomfortable.

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  4. I think we also have to be aware of the differences between classic autism and Aspergers. I am not a proponent of finding a way to “cure” everyone on the spectrum (and I don’t foresee that ever being possible anyway). But, I think we need to consider those at the extreme of the spectrum, who cannot communicate even a basic need, currently will never have anything near a “typical” life of independent living and employment. My outlook on research for treatments for this level of ASD is very different than for someone with Aspergers.

    I would also be interested in more information about Neo as a “self-diagnosed” Aspie. I could not find anything on her blog to really explain that and I’m very wary of such a claim.

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    marfmom Reply:

    I certainly can’t speak for Neo, but many adults on the spectrum are “self-diagnosed” using diagnostic criteria they find online (an actual diagnostic scale was floating around FB awhile back) or the DSM-IV. I’ve heard a lot of adults say they have trouble finding a psychologist willing to diagnose them (“You’ve functioned this far along, so what’s the point?” is a common argument), let alone a psychologist willing to work with them (I know we’ve had a VERY difficult time finding psychologist who are willing to work with adults on the spectrum, and my husband has a professional diagnosis). The difficulty in adults getting a diagnosis is actually really widespread and so “self-diagnosis” is common and seems to be pretty well-accepted throughout the community, in a way that it is not for many other disorders/diseases.

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