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Learning to Speak, Learning to Listen

Submitted by Landon Bryce on Thu, 01/24/2013 - 11:44
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"I think this kid's cool. I think I'm like him."

 

My friend Adam Bailey wrote this, in part because I asked him to. He's the guy who does the OWL comic strip, and he did the music for this cartoon we made together based on it. Adam has Asperger's syndrome. He works full-time repairing things. His wife and he have two sons, Colin, who just turned six, and Brendan, who is four. Colin has the sort of autism that makes life very difficult for himself and his family. Brendan is not autistic. When his mother recently asked Brendan what autism is, he replied, "when you need help to play."

Colin at Six

by Adam Bailey

When Colin turned five years old, his vocabulary was very limited and its use was seemingly irrelevant or incomprehensible to the outside world. He could say "eat" if he was hungry or when eating, and he could say "no" with some relevance, but for the most part he was grunting, screaming, and signing what he intended us to understand. His behaviors seemed animal-like at times, territorial, easily spooked, prone to violence if provoked; similar to a cat in a dog pound.
 
He received regular speech therapy and occupational therapy, both crucial for brain development, neither covered by insurance. These therapists encouraged us, telling us things like "Colin will speak someday, just be patient", but these things are near impossible to believe. Nobody can know how long it will take for his language to develop, and It's hard to believe people who are paid to bolster his development. I didn't think they would have ever told us that Colin will never be able to speak, even if they really believed it. They would likely continue taking our money and working with him forever, still telling us to be patient. Maybe I'm wrong, but I just didn't believe them. 
 
Day by day, the smallest advances were means of celebration...
Colin- "BLOO"
Me- "Did you hear that? he said Blue! he wants to watch Blues Clues! GOOD JOB COLIN!!"
Colin- "BUUUT"
Me- "YES Colin that's your butt! GOOD JOB!"
 
I want to feel proud of my son for exactly what he is, at any time. I don't like the thought of always wishing him to be more developed, but its so obvious that his slow development is harmful to him as well, as he turns to self harm and violence to get his message across.Time starts to move so fast, and development moves so slow, that any development seems like illusion. But things began to change...
 
There are certain movies and television shows that he really likes and always requests. Whether he can verbalize the title or not, he will point and grunt. One of them is "Blues Clues", and like i mentioned above, he can say "BLOO". We noticed him mumbling unintelligible words during the opening credits of almost every episode. Soon we started to realize that he was using his very limited vocabulary to explain which episode we are about to watch. The more we paid attention, the more we realized how many of these episodes he had memorized. He knows what is going to happen in (my guess) 80% of all the episodes he has seen, and he has at least 2 words for each episode. I think there are over a hundred episodes.
Colin- "Majet-an gal-assa"
Halfway through the episode, it becomes clear that this is the one where Magenta gets glasses.
Colin- "BLOO TEEF"
middle of the episode, Blue goes to the dentist.
And on and on and on.
 
There is a scene in the movie "Annie" where Annie is being chased up a railroad bridge and Punjab is rescuing her from a helicopter. There's a close up of Annie crying and yelling "Help, Punjab! Help!". Colin seemed to have picked up on the feeling of helplessness in that scene and related it to many areas of his own life. I want to warn readers that he has difficulty saying "Punjab" and my interpretation here is exactly how he says it. Its funny, but not meant for humor.
If he gets hurt: "POOP JOB HEP!"
If somebody leaves and he wants them to stay: "POOP JOB HEP!"
Sometimes if he just wants attention: "POOP JOB HEP!"
I can think of more examples of this from different movies.
 
He is not communicating in the way society is accustomed to, but he IS communicating. He is expecting us to know that how he feels, is similar to the scene in that movie. He wants us to feel what he thinks he feels, the only way he can figure out at this point. He is developing, and he is speaking in symbolism, in art. He is intelligent. he does have strong feelings and reasoning.
 
Colin has just turned six years old. Whether he had just started doing this, or if  we had just come to the realization of it, it was a breakthrough for me. I learned that when he has to work extra hard to communicate, we have to work extra hard to understand. It makes me wonder what other "communication" we are about to unlock together.
 
I wrote this for other parents of non verbal or barely verbal young children. I know how much it hurts, and how blinded one can be in the middle of very expensive therapies, and in a high stress parenting scenario that seems like a marathon race where you are out of energy but there is no finish line. It can be a lot easier to give up and pull out of the therapy, and admit to yourself  "my son will never speak" and imagine the worst for him. But don't....Don't give up.
 
When the therapists tell you to keep believing, KEEP BELIEVING. When you think the development will never happen, look a little harder and sometimes it already has happened. Don't think for a second there is nothing going on in that little brain. Don't think your autistic child will have nothing to give the world. Most of all, realize that crucial to your child's difficult development, is your understanding and love for exactly who your child is, at any level of development.
 
Your child is beautiful, and "they" are correct when they say "please be patient".
 
 
 
Adam Bailey
 
More writing from Adam here, here, and here. OWL lives here.
 

There Is Power, and There is Power

Submitted by Landon Bryce on Tue, 01/22/2013 - 16:52
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One of my primary metaphors for the autism community is the LGBT community. And, by the way, my choice not to include other letters there is deliberate, and I will not appreciate being corrected for it. Because I'm talking about history, and history is specific.

It's hard for parents of autistic people to understand that they have power that we do not, because they are themselves a disenfranchised community. How can we say that you have all the power when you are powerless to affect the changes you really need?

Well, there is power, and there is power.

And I think it might help a little bit to think about the differences between the power that the people represented by the letters L,G, B, and T have.

I'm a gay, white, man who lives in California. There are powerful organizations like the Human Rights Campaign who are going to make sure that my interests are not ignored. If I were a trans woman of color who lived in Arkansas, who would be looking out for me?  Me and my friends, that's who.

There are gay men who are taken seriously, like Nate Silver. There's a lesbian in the Senate. The L and the G are doing a lot better than the T, even though we aren't doing okay. The appearance of trans people on television or in sports can still give rise to shameless and outrageously bigoted reactions. Trans teens are less safe than gay teens, and gay teens are not safe. This segment of The Melissa Harris-Perry Show was unusual for showing real trans people in a substantial conversation on TV. I can see a gay guy talking about gay stuff on MSNBC every week. I can see a lesbian tell me the news every night.

I have the HRC behind me. I get heard in ways that transgendered people don't. I hate that. Actually, I don't like the HRC. I wish their top priorities were passing laws that made it illegal to discriminate against LGBT people in hiring or housing and getting LGBT people appointed to political positions. Instead, their top goals have been marriage equality and the repeals of Don't Ask Don't Tell. Those are good things, but they won't save as many lives as making it illegal to deny homes and work to trans `people and gay people in the states where that is still legal (most of them).

Do I have equality as a gay man? No.

Does this piss me off? Yes.

Do I have tremendous privilege, in comparison to trans people, especially if they aren't white, especially if they don't live in very blue states? Of course.

Is that my fault? No.

 

The parents of people with autism are represented by Autism Speaks and other powerful organizations. Parents may disagree with what Autism Speaks or the Autism Science Foundation do, they may cringe at some of the statements made by their leaders, but Autism Speaks is almost always going to get a seat at the table if they ask for one, just like the Human Rights Campaign. The HRC is never going to have a board made up mostly of B's and T's, just like the Autism Speaks board is never going to favor the interests of autistic people over the interests of our parents.

 

And in some ways this is fair and right. Gay people built the Human Rights Campaign and have contributed most of the money that makes it strong. Parents founded Autism Speaks and have paid to make it as powerful as it is. It's not wrong to have this power.

We just have to acknowledge it.

I don't think the organizations run by autistic people have a combined annual budget of $2 million dollars. Autism Speaks alone reported income of over $50 million and assets of over $20 million of 2010.

There's just no comparison.

 

And it's okay that it makes me angry that the parents of autistic people have something like 100 times the power that autistic people do.  This should make me angry, it's an unhealthy state of affairs.

Just like it's right for transgendered people to be frustrated that gay people have power that they do not.

 

And in each case, some members of the more powerful minority group buy in to the majority prejudices against the less powerful minority group. Christian Siriano, Dan Savage, and Ryan Murphy are all white gay men who have wounded the transgender community with unthinking bigotry. Murphy and Savage have both also done wonderful things for transgendered people.

Many parent advocates for autistic people have sometimes acted with unthinking bigotry toward autistic people. Several of those same people have also done wonderful things for us.

 

It's good for trans people to praise Ryan Murphy when he gets things right and complain when he gets things wrong.

It's good for me to do the same for parent advocates.

 

One place where both autistic adults and trans people still have to fight that gay people and the parents of autistic kids don't have to is get acknowledgement that we even exist. My friend Jay Jackson told me this story:

I look young and was going to play a teenage patient for the local hospital's "simulation day", where they would run medical simulations to test out their new pediatric ER. Once they found out I was transgender though, they asked me not to play a patient because "it is very unlikely that a young person would be transgender".

Even the MEDICAL COMMUNITY is grossly misinformed about transgender issues and it causes a lot of hurt.

I can imagine an adult with Asperger's syndrome being turned away for the same reason. I would not be as a gay man-- although someone might find an excuse to get rid of me for being gay, they would not tell me to my face that gay people are unusual. They might get rid of the parent of an autistic kid because they think it will be too much trouble to make things work, but they won't doubt your existence. That still happens to autistic adults. It still happens to trans people.

There is power, and there is power.

 

Treating Autism with Worms Is Gross

Submitted by Landon Bryce on Tue, 01/22/2013 - 08:48
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Five gross things from Jessica Ryen Doyle's article for FoxNews.com about using worms to treat autism.

1. Using worms to treat autism is gross:

Dr. Eric Hollander got the idea to study the use of the hygiene hypothesis to treat autism when he noticed one of his patients’ behavior improve while self-medicating with Trichuris suis ova (TSO), the eggs of a whipworm.

 

2. Telling people how to access a treatment that has not been approved by the FDA is gross:

The Food and Drug Administration has not yet approved TSO therapy, but there are ways to buy the product – either online or by traveling to another country.

 

3. Calling an autistic teenager a child is gross. The guy Hollander is talking about is sixteen:

“So based on the fact that this child had substantial improvement – it didn’t cure the autism, but it had a major impact on repetitive and disruptive behaviors,” Hollander said. “So, we designed a study to test this in a more systematic fashion.

 

4. That doctors are actually planning to put worm eggs in autistic people and study what happens is gross:

Hollander said the trial will focus on 10 adults between the ages of 18 and 35, who are of normal intelligence with good verbal skills – that way the participants can describe the effects. Participants will also have allergies or a family history of autoimmune diseases.

During the first phase of the trial, participants will either get TSO (administered in a clear, odorless liquid) or a placebo for 12 weeks. There is a washout period of four weeks, after which patients will switch to the opposite (if they first received a placebo, they’ll get the TSO product). This way, everyone has the opportunity to get active medicine and a placebo.

 

5. The Simons Foundation is gross for funding this study.

 

Autistic Teen Finds Fun and Success on Basketball Court

Submitted by Landon Bryce on Sat, 01/19/2013 - 11:53
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Basketball players at William T. Rogers Middle School love playing with autistic team member Nicholas Grippo:

“I like the Nick play,” Nicholas Grippo said. “Me, Jack and Frank run the Nick play.”

“It just felt happy, not a lot of kids who have autism like Nick — they’re not gonna get that chance and he just had the happiest face you could ever see. It was just great,” teammate Jack Cutillo said.

“I was crying. I was crying. It was just amazing,” Denise Grippo said.

“It’s been a special time.  He made everyone laugh and smile,” added teammate Paul Cooper.

 

Action Alert: #IDeclare that God Loves Me and My Autism

Submitted by Landon Bryce on Sat, 01/19/2013 - 09:18
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#IDeclare that I don't have to beat autism to succeed.

 

It's wonderful that Joel Osteen Ministries included autism in the YouTube video they made to promote their #IDeclare social media campaign.

It's actually pretty cool: people make positive statements about how God empowers them to take control of their lives, and then Tweet them, or post them to Facebook, or take pictures of themselves with signs and post them to Instagram or send them to a website.

So what's wrong with including "I will beat autism" among the other signs in the video, like "I will choose faith over fear"?

My friend Paula Palmer sent this to me, and I'd like to let her explain why it bothered her:

When I first saw this video it was on a FB page dedicated to a dog named Buck who was found horribly maimed by buckshot wounds all over his body. Whoever did this to him still hasn't been identified but he is recovering with the help of his wonderful rescuer, his doctors, and all the people who have donated to his cause to help pay for his medical expenses and care. I know the video was posted to inspire people to do their best and be brave like Buck has been - he had surgery this week to repair his eyes and is still in excruciating pain - but when I saw the boy holding a sign that said, "I will beat Autism" I couldn't help but think that no one expects Buck to be anything but the best dog he can be, whatever his condition, and I couldn't also help but think that this boy deserves as much respect for his autism.

It pains me that anyone would believe they have to overcome the very thing that makes them unique and special in God's and our eyes. I think what would serve viewers even better would be a sign that says God will always work with us right where we are. We all have obstacles to overcome but we can only accomplish our goals by being our authentic selves, the way we were made. Buck is already whole and healed just as he is and I also believe the boy in this video is whole and healed just as he is and I would like to see him have the opportunity to share that kind of happiness with the rest of us.

We all probably want the same things for the kid holding the sign that the person who made it does. We want him to communicate easily with others. We want him to learn and contribute and, eventually, to live independently. We want his life to be free from unnecessary pain.

But I don't see any of those things as beating autism.

Because I also want this kid to accept and love himself exactly as he is. I want him to make the contributions only he can make. I want him to be a first-rate, completely joyful autistic person, not a second-rare imitation of a neurotypical person.

The "I Declare" campaign is about the positive power of language. Its creators also need to recognize that language can carry unintended negative messages.

I want the people participating in this campaign to see us, and to know that many of us see the presence of God and autism simultaneously in our lives.

So---

1. Create your own "I Declare" message about the positive power of autism or autistic people. Drawing inspiration from the YouTube video, here are some examples:

#IDeclare that the greatness God has placed within me is indistinguishable from my autism

#IDeclare that autistic people will choose pride over shame

#IDeclare I will exceed your expectations for someone with autism

#IDeclare that autism is part of my destiny

#IDeclare that I will overcome every challenge and celebrate every gift

#IDeclare our autistic children are blessed

 

2. Make yourself part of the campaign! Tweet your message! Post it to Facebook! Take a picture and post it to Instagram or send it to Joel Osteen.

 

Simple.

Positive.

Click here to watch the video.

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