The autism stories no one hears

This article that I was introduced to this week really moved me. It almost brought me to tears. It was written by Amy Mackin and published 7/23/13. As I was reading the article, I kept thinking, “These words are my words.” I hope you enjoy the article as much as I did.

Several inspiring people with autism and their families were profiled on Katie Couric‘s show this summer. It was wonderful to see part of a talk show dedicated to educating people on what it is like to live with autism.

But part of the autism spectrum wasn’t shown — the part almost never seen in mainstream media. Where are these people? I am a parent of a child with autism, and I am lucky. My son received the support he needed when he needed it and falls into the part of the spectrum known as “high-functioning.” He has developed coping mechanisms to deal with his anxiety and sensory challenges. He has learned to tolerate some flexibility when his routine is disrupted. Most important, he is now able to share his extraordinary intelligence, his endearing personality and his unique social conscience.

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.

These people react so severely to sensory stimulation that they will seriously injure themselves as a way of relieving the stress. They are often nonverbal. Some require headphones streaming soothing music or familiar voices in their ears just to leave their regular environment for a short time.

Children and adults with autism this severe exhibit behaviors in public that mainstream society views as completely inappropriate. They mumble or yell involuntarily. They may reach out and grab a stranger’s hand or stroke someone’s hair.

I am not referring to people with nonverbal autism who have average or above-average IQs — those who possess the cognitive ability to communicate but whose bodies betray them. Computer applications and other technology can help these people communicate and do many of the things anybody else does, if a little differently.

Instead, those whose stories I’m missing do not have the intellectual ability for communication, whose IQs fall into the severely or profoundly impaired range. These are people who will never read or write or type. They will never graduate from high school; they will likely never marry or hold a job.

When I advocate autism awareness, it’s this hidden spot on the spectrum that I champion.

No one disputes the incredible importance of early intervention — the program of beneficial therapies started well before age 5 — and continued social-skills training and support within the educational system. Certainly much more work can be done for all people who struggle with autism. But when I fantasize about finding a cause and a cure, when I dream about a wonder drug that could reverse the effects of autistic disorders, I don’t think about my son or others like him. I think about those at the bottom of the spectrum — their daily struggle and that of their families.

The world is slowly becoming more aware and more tolerant of those who live with autism, but to understand the breadth and diversity of the spectrum, and the impact of living with these disorders, we must see the entire range, not just the hopeful, inspirational stories.

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.

Amy Mackin is a writer in the Boston area. From the Washington Post.

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Where is the apology?

I’m going to apologize in advance because this is going to be as much of a rant as it is a blog post. But I saw something Friday that has really gotten under my skin for multiple reasons. And I have to get it off my chest.

I follow a few fellow parents who live with a child with autism of varying degrees. Friday, one of them posted something that I don’t understand why it’s not been exposed before. It appears that rappers Drake and J Cole wrote a lyric in the song “Jodeci Freestyle” that not only mentions the N word in just about every other line, but it also demeans the Autistic community by equating autism with the word ‘retarded’. I tried to read the lyrics, but had to stop after the first verse because I couldn’t deal with all the profanity and ended up using the search feature on my browser to find the line for myself and be able to read it in context. I wanted to be sure I was on point and not take it out of context. I wasn’t:

I’m undoubtedly the hottest and that’s just me bein’ modest
Go check the numbers dummy, that’s just me gettin’ started
I’m artistic, you n—– is autistic, retarded

And that was as long a stretch as I could copy without including another profanity.

This is unacceptable, prejudice speech.

These people (Drake and J Cole) can not know any autistic people. If they did they would know that most autistic people are just as mentally capable as they, if not more so if their grammar and spelling are any indication. They just need the right avenue to show it. My Ninja Cat is an ace at academics and thinks so creatively compared to the rest of us, not just to solve problems but artistically, it’s amazing. He creates the most intricate drawings and can explain what every cog is for and why each beam is in its place. He constructs huge structures in Minecraft and with the switch of a lever can make objects in that world do things it would take me twice as long to construct. Anyone that has a child with autism will tell you similar stories.

This is unacceptable, intolerant speech.

It’s using the Autistic community as the punch line of a very bad joke, so to speak, by putting down those around him. It’s using autistic people as an antithesis of his perceived greatness. Has he ever met Dr. Temple Grandin, who has done more for not just the Autistic community but people’s lives in general through her research? She has done more that touches lives directly through her veterinary research than Drake and J Cole have through their so-called art.

So, where is the outrage over this? Where is the call for an apology, the dropping of endorsements, the derision, the drop in sales that hits him where it would hurt the most – his wallet? I’ve not heard one word about it until my comrade on arms posted it Friday night on Twitter. I’m here to call for the apology! I’m here to call for the dropping of the endorsements, I’m here to deride him for his choice of words, his bigotry, his intolerance. The more we join together, not just as an autism community but as a group of people who do not tolerate bigotry and prejudices, we will be heard. Contact Sprite. Contact Kodak, Let them know their brands shouldn’t be associated with bigotry. Please help me spread this and stop the bigotry!

p.s. (7/17/13) There is a petition on Change.org calling for this to happen. PLEASE go to http://goo.gl/35aBr to sign the petition and make your voice known.

Acceptance, the Greatest Gift

After three years of making our way in this world with Ninja Cat’s high-functioning autism, we have finally run into my first real taste of – I wouldn’t say discrimination – but someone not willing to try and understand. It absolutely broke my heart for this to have happened to him; but, I guess we should feel lucky for to have taken so long to have happened.

Jigsaw

It was a local art camp. Only four days for four hours each day. Ninja Cat loves art and some formal training, however brief, would be a great help to him. That and it would be a great chance to earn his Artist activity badge for Webelos. When I called to register him and asked about him coming even though he was a high functioning autistic. They said it would be no problem and to bring him. So, I’m left thinking that they will be prepared for him and it would be a great four days of learning about something he’s pretty passionate. So confident, in fact, that I took the first day to go berry picking 45 min away from my house with my best friend – even letting her drive. That confidence soon shattered.

Not one hour into the first day the camp calls saying that Ninja Cat is having trouble and wanting to come home. I told the camp director a couple of quick things to do to help him calm down (give him a quick break and a copy of the schedule) and get back to participating. Apparently, that didn’t do any good, because they call a bit later where I talk to him personally and get him to stay. Again, I told the camp director to get him a copy of the schedule (she hadn’t done that yet), give him another few minutes to get his bearings, and would call to check on him after I finished. Later, he was somewhat better, not great, and he said he could last until I came to get him at the end of the day.

At the end of day, the camp director and I have a talk. Only then do I find out that she was blindsided by his autism (the person I registered through didn’t pass along his difficulties??) and that she admits she doesn’t have the skill set to meet his needs and there was no one there with the knowledge or training to help him. She all but threw her hands up right then, not even willing to hear the tips and tricks I have to help him acclimate. Optimistically, we came to the agreement that it was first day jitters and that he would be better tomorrow. But if not, he would come home early from camp. She even sent me an email over it. I wouldn’t say it was tersely worded; but, it was plain the director didn’t plan on even trying to make any accommodations for him, despite his difficulties. But again, me and my optimistic self knew that tomorrow was going to be better.

It wasn’t. The camp calls before the start time saying that he’s going to have to come home. He had carpooled with his best friend’s mom, who was still there and brought him home. When the three of us talked about it, we came to the conclusion he had just gotten impatient for the day to start and wanted to go ahead and start drawing something. But, the plan was for them to go outside first so the art supplies hadn’t been set out yet. It sounded like they didn’t even really try to get him to slow down and participate with the rest of the group.

Every other time Ninja Cat has participated in anything, everyone there has gone above and beyond to make him feel accepted and welcome. This time it doesn’t feel like it they tried. I admit I’m hurt and upset. I’m trying to see things through their eyes. It’s hard. I wish they could have done more. I wish I could have done more.

I am NOT Adam Lanza’s Mother

December 14 saw the second worst school shooting in American history. I don’t have to rehash the numbers or the horror that happened that day. The nation truly empathizes with those who lost wives, mothers and children in an event so horrible I cannot get my imagination around it. But there is something I do understand. I understand that even in the aftermath of what happened in Newtown, CT, those that share in a condition Adam Lanza may or may not have been dealing with should not be stigmatized.

To date I have seen no evidence that Mr. Lanza has been diagnosed by a licensed psychologist, or other qualified personnel, with high functioning autism (Asperger’s Syndrome). Everything reported in every media outlet has been conjecture or from a ‘family friend’ or ‘sources’. No credible person has come out saying with any certainty that Mr. Lanza has any form of Autism or any mental illness.

This can be the most damaging thing that could happen to the cause of Autism in not just the past decade, but ever. Those with high functioning autsim have an initial stigma around them because of their lack of eye contact and perceived lack of empathy. Often times, they are immediately brushed off as aloof, or unintelligent or both by their peers; and, there are times they are bullied because of it. Scholars and scientists in the Autistic community have studied people with Autism for years and are only now making strides in showing the community at large that those with Autism only lack the ability to pick up on social cues. Once they are able to understand the emotion being felt, they are able to connect fully, feel joy or remorse or whatever the situation calls for. So, for Mr. Lanza to suddenly become the proverbial poster child for high functioning autism is a disgrace and a disservice to the Autistic community.

Ninja Cat is one of those that gets to deal with this on a daily basis. He is a super smart 8 year old boy. He loves Minecraft, pizza and our trusty dog Bucky – not always in that order. He’s never been a big snuggler like Danger Boy and when he gets in trouble I have to tell him I am upset with him and exactly why. Is he given outbursts? Yes. Have I gotten a call from school because of them? Yes. Do I think this is going to make him a mass murderer? Not for a minute. He takes good care of his stuffed animals as if they were Bucky. There are times when he sits in my lap and lets me stroke his hair. Just today he helped a toddler to his feet that had fallen in the hallway at school where just two years before he would have just the tot stay on the floor because of his then dislike for ‘babies’. When he senses an injustice against his code, he will defend himself, his brother, or whomever to his utmost. Ninja Cat’s base personality is like 99% of the other Autistic children I have met – happy go lucky and will band together to support each other when things get tough.

Because of all this, it pains me when anyone in the media says Mr. Lanza ‘supposedly’ had or ‘may have had’ high functioning autism, to the point I have to bite back tears. Citing an unnamed source does not make it any easier on me, or those trying to see their way with this diagnosis. My hopefully faithful readers, I would love it if you help me spread the word, contact the mainstream media, or even your local media, and ask them to stop reporting speculation and stick to the facts. Isn’t that what news is supposed to do?