Blue? Red instead?

I wanted to respond to light it up blue vs red instead.

Blue is from Autism Speaks. They are highly controversial ESPECIALLY in the autism community. Their money isn’t allocated in ways agreed with and many in the autism community don’t believe the methods and philosophies they they preach are actually good for the one with autism. Too much of their donations go to marketing their brand. They went way too long without having an autistic person on their board (who has since resigned due to disagreements with their practice). Their support of studies to find a cure are very controversial, this identifies autism as a disease and makes those with autism feel they are trying to be eradicated. Many fear prenatal testing (like that for down syndrome) will lead to more abortions and makes them feel unvalued.

Actually autistic (Instagram) is a group of individuals who are just that, actually autistic. One ActuallyAutistic author writes 10 things they wish people knew about April/autism awareness. They are functioning in a way they are able to spread their message and disagree with Autism Speaks-and chose red instead. They speak from experience since they are actually autistic, and they are speaking for the autism community and what they believe is the right way to address autism needs, funds, etc.

Here is the thing: it is making it an A versus B. I am neurotypical. I do not have autism. I am not actually autistic. My son is non-verbal and a preschooler. He is actually autistic but does not (yet) have a voice. I am not alone in this vs. How do we find this balance?

There is an autism mom, Eileen Lamb–Autism Cafe on Instagram (she has high functioning autism as well as a son who is non-verbal and more severe) whom I have created an online friendship with. She is an advocate for her son, for his growth, for his ABA therapy, but is also honest about the challenges; my kind of girl. She just wrote a book, All Across the Spectrum, which is out for pre-order, ready to be released later this spring. She has shared her journey and in that has been harassed by Actually Autistic for her stance. She has been told she is torturing her son for sending him to ABA. Torturing. She, a woman with autism, is torturing her non-verbal son by getting him therapy to help him have a voice, grow, and be the best he can be.

We believe we are doing our best for Nolan. We, too, chose ABA therapy. We feel it is giving him skills. It is giving him a voice. They take him on field trips and give him experiences where he is also safe (he is one on one). They genuinely care for my son. Since he is non-verbal, we have to rely on non-verbal communication. He goes with a smile. He leaves with a smile. He hugs his therapists. He does not appear to be tortured at all.

Here is our stance. Nolan literally does not have a voice right now. At this point in his life, he would not be able to be a part of Actually Autistic because he would not be able to speak for the cause. He goes to therapy and HAS FUN. He goes to therapy and he is growing. He is learning to speak (with sign, a talker, and his voice). He can stand up for himself one day, yes. I am a mom who cannot hear my son’s voice so I am doing my absolute best to help him with the information he is currently providing me. When we were diagnosed, it was wear blue to support autism. It was wear blue to unite everyone in the acceptance of individuals (child and adult) who have autism. I feel like an old person saying, “back in my day” but really that is how it is. It is how the movement of acceptance and love of all people on the spectrum began-in blue.

TOTALLY HYPOTHETICALLY SPEAKING if someone decided the people who designated pink for breast cancer were incorrect in their methods, therapy, and/or spending and “ActuallyCancer” made purple the color of breast cancer awareness–would people know that them wearing purple was in support of breast cancer? Probably not. Pink is the color of breast cancer awareness-regardless of who began it–that is how people recognize it and unite to support it.

That is how we feel about blue. If I suddenly started to wear red in April, could anybody know what I stand for? What we are promoting? Who I am in full support and love of?

We do not believe in everything Autism Speaks says/spends. What we believe in is our boy. We believe in the cause of awareness, acceptance, and starting conversation, which is what wearing blue, the image of puzzle pieces, and advocating World Autism Day do. We are not actually autistic, so we can not speak as if we are. We do not believe in everything Actually Autistic is saying about the therapies that are helping our son (and make him so happy to go to), that there isn’t a need for more awareness, or that Autism is invisible. We support research to test for autism in-utero. We did testing for down syndrome when Nolan had an echogenic focus (soft sign for down syndrome) on an ultrasound, not to decide about keeping the baby, but to prepare and have resources more readily available to us if needed. We feel this help with even earlier intervention and better outcomes.

We do support our son, our family, and the mission to help him grow and spread awareness and acceptance to the world about autism. To go with a color that people understand, to stand for a mission that people have been exposed to–blue.

Now, please, if you are going to donate, donate to a group that uses their funds more appropriately; a group that involves autistic people and their families better than Autism Speaks. WE ARE in support of that. This is a small list of sites that we feel would me more beneficial to donate to:
National Autistic Society: https://www.autism.org.uk/
Autism Society of America: http://www.autism-society.org/
**Autism Society of Wisconsin: https://www.asw4autism.org/
**Autism Society of Fox Valley: http://www.autismfoxvalley.org/
**Friends of Autism: http://www.friendsofautism.org/
Autism Canada: https://autismcanada.org/
Autism NZ: https://www.autismnz.org.nz/…

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