Despair. Fear. Broken. Lost. Helpless. Burden.
According to Suzanne Wright and Autism Speaks, this is my life. I'm Autistic and the parent of an Autistic child, so I assume that my life is supposed to be twice as terrible as this because we have twice the autism.
Except, it's not.
I feel like my life is pretty amazing. I feel boundless love for my child, my family, my friends and the life that I have created for myself.
I have never viewed my Autistic child as any of those terrible things. I could never feel despair, or broken, or burdened when I think of him. Not once. Not ever. I've never been more sure of anything in my life.
I see a sweet, wonderful, talented, unique, smart, funny, amazing human being that I am genuinely more in love with every single day.
Then, I thought to myself, maybe that's because I am all of those terrible things that Suzanne Wright says? Maybe I am too deep in this whole autism thing to see how much our lives are supposed to suck? I guess that could always be a possibility. I decided to get some other opinions.
I asked my son what words he felt described his Autistic self:
creative, funny, smart, sensitive, handsome, pretty cool
I also asked him how he felt about having an Autistic mother. He typed on his tablet to me:
"I think it's very nice."
See, another person who doesn't hate his Autistic life! Or the Autistic family members who are supposed to be a huge burden. Of course, he is pretty deep in this whole autism thing too, so maybe we needed to get an outside opinion.
My allistic husband gets pretty upset when I apologize for filling his life with despair and being a terrible burden to him. (He seems to not think those things are true. Weird.) So, I decided to forgo the apologies and ask him directly what it was like having an Autistic wife and parenting an Autistic child. Remember now, he has to deal with twice the amount of fear and hopelessness that Suzanne Wright does, so I prepared myself to hear some things that might be painfully honest.
"My life is like a giant plate of cool beans with a side of awesomesauce!"
He's got a way with words.
I was still determined to find out from allistic friends and family members if these terrible things could possibly be true. I mean, Autism Speaks is the nation's largest autism non-profit. In spite of donating less than 5% of their profits to actually help support Autistic people and their families and having absolutely NO representation from the community they purport to serve, they MUST know best, right? They're HUGE and they have the most money! That counts for something, I guess.
The grandmother of an Autistic child said her grandchild was:
"creative, smart, gorgeous"
Another grandmother of an Autistic grandchild said her grandson was:
"a joy and a blessing"
The aunt of an Autistic child said her niece was:
"the coolest kid I ever met!"
The friend of an Autistic adult (full disclaimer, she's my friend, she's talking about me!) said her friend is:
Another friend says of her Autistic friends:
"I get to see the world from a whole different perspective"
An aunt says that her Autistic nephew is:
"creative, inventive, full of ideas and compassionate"
The mother of an Autistic child said:
"She is the best thing that ever happened to me. I love and accept her
The father of an Autistic child said:
"My son is Autistically amazing!"
I started to notice a trend. Not one individual that I spoke with had anything negative or disparaging to say about the Autistic people that they love. It's almost as if they realize that life is difficult and complicated, disability can be hard, but that our Autistic lives still have value and beauty. It's almost as if they accept us unconditionally as if we were also human beings with thoughts, feelings and worth. Perhaps they believe that with our challenges also come many wonderful gifts and abilities? Maybe they understand that we all have a place in this wonderful, diverse world?
So, back to these words.
Despair. Fear. Broken. Lost. Helpless. Burden.
These are the words that Autism Speaks says I am. My son is. My Autistic friends are. This is what we do to those around us. This is what they see when they look at us? I'm sorry Autism Speaks and Suzanne Wright, but that is not the reality that we live with.
Love. Compassion. Acceptance. Creative. Inventive. Awesome.
Cool. Joy. Blessing. Smart. Handsome. Unique. Funny. Amazing.
A Giant Plate of Cool Beans with a Side of Awesomesauce.
This is what I can understand and relate to in my own life. Maybe I'm ridiculously blessed with extraordinary friends and family. Maybe Suzanne Wright and Autism Speaks are WRONG. (Actually, I think it's both!)
When I asked my son what "This is Autism" meant to him, he thought about it for a while. He told me that it meant many things, including things that are really easy for him because of his Autistic brain and the things that are really hard for him.
"But the most important thing is autism is love."
Autism Speaks, my Autistic son is speaking, I think it's time for you to listen.