Monday, July 29, 2013

Severe Autism: Autism in the Shadows - Thank You Amy Mackin

"My son’s story is one of hope, not unlike the stories regularly broadcast on television, printed in magazines or making the rounds on YouTube. Yet the autism spectrum is wide and diverse, and many who suffer from severe autism will never reach the level of functioning that my child has achieved. Although these people are also part of the story, we rarely hear their stories."

Amy Mackin, Autism in the Shadows, Washington Post, July 19, 2013

Amy Mackin is a writer and a blogger who writes at  She is also the mother of an autistic child who she describes as high functioning in the Autism in the Shadows opinion piece she wrote for the Washington Post. Although here son is high functioning Ms. Mackin's article is an eloquent, direct and powerful statement about the invisible autistics, those who live at the severe end of the autism spectrum.  As the father of a 17 year old son who lives at the severe end of the autism spectrum I thank Amy MacKin for her concern for those with severe autism, those who are ignored and neglected (with some exceptions) by both the mainstream media AND by  autism research professionals.  Amy Mackin has spoken the truth about severe autism honestly and directly:

"We must see the pain of a parent who watches her child smash his head against a concrete wall, who throws himself on the floor of a store because he simply cannot stand the fluorescent lights another second; the person who starts violently screaming because the crowd getting off the subway terrifies him. We must feel the anguish of compassionate caregivers when everyone around is staring at their loved one with horror and judgment. We must comprehend the grief of parents who are forced to acknowledge that their children may never be able to care for themselves, and we should consider all the future decisions and worry that realization encompasses.

Many personal stories about autism make us smile and renew our faith in humanity. But some stories will make us cry. They should, because autism can also be terrifying and hopeless. This side of the spectrum still lurks mostly in the shadows. But to fully understand why we search so exhaustively for answers and doggedly seek a cure, these stories must be seen and heard, too."

Thank you Amy Mackin. 


Anonymous said...

People like happy endings. An autism story that starts with a lost child and ends with a successful adult will get more donations then a story of an adult that smashes their head against a wall.

Amy Mackin said...

I am humbled and grateful that you feel I adequately spoke to this issue in my article for The Post. I am in awe of the difficult decisions families like yours must constantly make, and I believe it's important that the media cover all sides of the story. I wish you and your family the very best.

H L Doherty said...

Your article is very much appreciated Ms Mackin.

Lorri said...

Nice to hear from someone who is honest and open. No hidden motives only an acknowledgment of the range of disability found in individuals with autism.

Mommie that Gets It said...

Well done Amy Mackin!

Joanna H. said...

I've been thinking about this a lot lately. I did this a few years ago, too. Every now and again, it will hit me. My father is 60, and even though I have an associates degree, a part-time job, am working towards a bachelors (a long and difficult endeavor, resulting in my leaving school twice and failing a class), and have a somewhat normal social life (for the first time in my whole life, at 24). But my parents and I am constantly reminded of the 24-year-olds that are light years ahead of me, with full-time jobs, masters, boyfriends and husbands, children, and who have long since outgrown their Mary Janes and their imaginary friends. My father tells me that he worries constantly about what will happen to ME after he dies. I can't even imagine how you, Harold, must feel about what will happen to Conor after you die.

There are the obvious concerns, like where will my child live and who will keep him from running off. But there are also the more subtle concerns, like who will cuddle with him, play with him, and love him like I did? How will this person explain what happened to Mommy and Daddy when your time comes? Will he understand, or will he spend ten years after your passing wondering where Mommy and Daddy went?

Another thorn in the side of parents of autistic children is social perception. Everybody wants to help the poor children, raise money for children, feel sympathy for cute little children. There is significantly less sympathy, funds, and support for children and adults once they are too old and violent to be cute, and people other than parents no longer have that parental instinct towards them.

On a somewhat related note, I am making a concerted effort not to refer to myself as autistic, but as having Asperger's Syndrome. AS has some things in common with autism, and is part of the same "umbrella" of illnesses, in the same way that schizophrenia, schizotypal, and schizophreniform disorders fall under the same umbrella. However, just as residual schizotypal disorder is vastly different from full-blown schizophrenia, AS is different from the kind of autism that Conor has. This is my tiny attempt at raising awareness.