Art To Cure Autism

Thank You to Jacob Artson and Mark Nathanson

A couple of weeks ago I received the Spring 2006 issue of Advances, a quarterly publication from Cure Autism Now. I flipped though it, reading with interest about current research projects and fundraisers. Then I got to page thirty, which was titled Perspectives, and read two columns by two thirteen-year-old young men with autism, Jacob Artson and Mark Nathanson. The were both introduced to typing a few years ago. The writing of these two young men gave me a gift very few people could give me, a glimpse into a world that I could never get on my own. I have always, always wished that I could be in my son's body for a period of time. I would like to know what everything feels like to him. I would like to feel his emotions the way he does. I would like to hear his thoughts and ideas the way they occur to him in his mind. I know that not every autistic person's experience is identical. My son's experience in life may not be exactly the same as these two young men, but they shared important things from their personal experience, and as a parent, it gives me precious information that shapes my attitude and interactions with my son.

Here is a portion of what Jacob wrote:

You have probably never met anyone like me. For most of my life, I was treated as a retarded person. I can't speak or write, and therefore people assumed for the first seven years of my life that my cognitive abilities must be coextensive with  my motor abilities — that is, virtually nonexistent. When I was seven years old, a speech therapist introduced me to typing and my life began anew. At first, I wondered often why I had to struggle so intensely to produce a single communication that others take for granted, without even being aware of all the intricate interactions going on in their brains but not in mine. Later I began to wonder whether I had committed some awful sin for which I was being punished by not being able to speak or move my body like all the kids around me.

Here is a portion of what Mark wrote:

The first time I realized I was different I wanted to die. I couldn't ask for help because the words wouldn't come out. I wanted to shout help me but know one could hear my silent thoughts. The anger grew and grew.

My brain sees things as if it happened for the first time. I flap my arms because I need to feel my body. My brain and my body arent connected. I hear everything and take everything in. I just cant tell you when I need to. I think so quickly like a moving picture and I am aware of others

Mark also wrote:

My ability to express my thoughts has given me hope for my future. I can be a lawyer or a space engineer or anything. All children have the right to be heard whether its through facilitated communication or there voice. It's the responsibility of every parent, doctor and scientist to make available to an autistic child or adult the ability to communicate. In that way, the person can connect and live and function as whole members of society.

There is much more to each column than I have reproduced here, and it would be well worth contacting Cure Autism Now and get a copy of the Spring 2006 Advances.

A big thank you to Jacob Artson and Mark Nathanson for writing so eloquently and being willing to share so much about their personal experiences. As the mother of an autistic child who can not speak or write, I thank you from the bottom of my heart. Your impact on me has been profound. Please keep sharing your thoughts with the world.

Thanks for stopping by. Linda

I'm Back Where I Started

A few weeks ago I wrote a post titled Not All Autism Is Equal. It received more comments than any other post in our short blogging history. I want to thank everyone who read it and left comments for us all to consider. I want you to know that I read comments repeatedly and consider them carefully. A portion of a comment below, from Phil Schwarz, is one that I have spent a lot of shower and driving time on. I don't know about you, but in the shower and alone in the car are the two places where I can engage in uninterrupted thought. In response I just want to throw out a few ideas and see what everyone thinks. Phil wrote:

Of course, we want autistic kids to be able to communicate, to be able to make sense of the sensory input they get, to be able to mediate impulsivity, to be able to manage self-care needs, to be free from sensory distress, to be able to successfully navigate a social landscape populated by a majority with social instincts quite different from their own.

Interventions and therapies and teaching methodologies that achieve those ends — without trying to make the child over as "normal" or non-autistic are good things.

Through them, autistic kids will become very capable, very "high functioning" young adults and adults ... but deep down inside, still autistic. Their internal patterns of cognition, sensation, emotion, aesthetic sensibility, and so on, will be autistic.

Not the same as yours. But no less capable, no less worthy, no less valid.

I'm with you through the whole first paragraph. I'm in total agreement. Yes, I want these things for my son. On to the second paragraph — you had me, you lost me. We should use interventions, therapies, and teaching methodologies to achieve the goals in the first paragraph without trying to make the child over as "normal." Okay, I get fuzzy here. Isn't everything described in the first paragraph considered "normal," normal behavior, normal function.

Then I wonder, are all interventions, therapies and teaching methodologies acceptable? Are they all respectful of the child's "autism?" So let's consider the smorgasborg of therapies: speech therapy, occupational therapy, sensory integration therapy, physical therapy, ABA, floortime, RDI, and the list goes on. Which ones seek to make a child "normal?" And which ones don't? Or is it not the therapy itself, but the intent of the therapist delivering services that determines if it respectful of the child's "autism?" Then there's biomedical intervention: diet, supplementation, chelation, hyperbaric oxygen, and, again, the list goes on. Which ones seek to make the child "normal?" And which ones don't? Or is it the doctor's or parent's intent with the biomedical therapies that determines if it is respectful of the child's  "autism?"

Third paragraph — I believe that through these interventions, therapies, and teaching methodologies autistic kids can become more capable and higher functioning. But I don't know that all autistic kids will become very capable, very "high functioning" young adults and adults. And I do know that there are many "low functioning" autistic adults. I know that my son is an intelligent, emotional, thinking person, and his capacities in those areas will continue to grow and mature as he grows up. But his function is a different question. How well will he be able to communicate and care for himself? Will he be able to live independently? I won't live forever; I won't be able to care for him forever. These questions are important for me. So I pursue all therapies for my son, educational and biomedical, to help him achieve higher function. There is too much at stake.

Phil's last line is striking and beautiful, but I don't completely agree with it. Please read this carefully. I don't want to be misunderstood. Every child is a masterpiece. No exceptions. Every child is a masterpiece. A gift. A sacred responsibility. Not one child anywhere is less worthy or less valid than any other. Not for any reason. But, at this moment, my child is less capable. I'm not being cruel. My son is smart, affectionate, funny, and has really great ideas. But his body does not cooperate with his ideas. He can not carry his ideas out the way he wants to. He wants to talk; he tries every single day. He has very little success. So forgive me, but I do see him as less capable, less able. I assume that's why they call autism a disability.

I intend no disrespect with anything I write. As a parent I try to remain positive, hopeful, and realistic about my son's needs and his future. At the end of his comment, Phil identifies himself as an Aspie father. I think I can safely assume his child has been diagnosed with Asperger's, and naturally that is the foundation for his perspective. My son is not Asperger's; my son is the one the "experts" call "low functioning and mentally retarded." I can't help but feel that I'm back where I started. Not all autism is equal. So, as parents, why should our choices, strategies, and responses be the same. Our children are not the same.

Sometimes I feel like we are arguing about words. Certain words make us flinch or feel uncomfortable. "Cure," "high functioning," "low functioning," "normal." In the end it all boils down to one thing for me: I don't see my child as healthy, and I want him to be healthy. I know he's different, and that's fine. I also know he is not healthy, and that's not fine. That's what motivates me.

A big thank you to Phil Schwarz for taking the time to write such a thoughtful comment. It has caused me to reflect, re-evaluate, and be vigilant with my attitude.

Thanks for stopping by. Linda

A Didactic Tale

A while back one of Hal's friends told him a story about what had happened with his father. I have been thinking about it and I want to share it with all of you.  Our friend's father was about sixty years old at the time, and he began having confusion and severe memory problems. He took his dad to several doctors, and after ruling out Alzhemier's and other diseases common to old age, he got this kind of response, "Well, you know he's getting older. It's not impossible for dimentia to set in this early. There isn't too much you can do." But our friend persevered. He took his dad to a doctor that has helped us with Beau's biomedical treatment in the past. This doctor is very holistic in aproach. Some blood tests were done, and it was discovered that our friend's father had an extremely high iron level. As it turns out, very high levels of iron are toxic and can produce just these kind of symptoms. This doctor's recommendation was to donate blood as frequently as is allowed and take a supplement that would help the iron level drop to normal range. After a number of months, his dad returned to the capable sixty-year old man that he had been before. No confusion and no memory problems of a significant nature.

So many lessons to be learned from this story that can be applied to our kids and the autism-mercury debate. Lessons like, shop for doctors. Get multiple opinions. As a parent, you know your kid better than anybody else; trust your gut instinct and persevere. To learn something new, you sometimes have to get out of the mainstream. There is more to the world of medicine than conventional, western practices.

This may be the biggest lesson of all — we don't know everything. Be open to new possibilities. Humans used to believe the earth was flat. Technology improved, and they found out they were mistaken. I know the autism-mercury connnection hasn't been proven yet to most of the scientific community, but that doesn't make it an impossibility. My personal belief is that there is no smoke without fire. I believe evidence will continue to pile up, making the relationship between mercury and autism undeniable. For now, that's just an opinion.

A side note about the story, we found out that very high levels of iron occur most often in men. Women menstruate monthly and, therefore, lose iron regularly. Men may need to donate blood in order to maintain healthy iron levels. As always, talk to your doctor.

Thanks for stopping by. Linda

Skat-a-thon Update

A couple of weeks ago in a post called Autism 101, I wrote about my seventh grade daughter's class having Disabilities Day. I spoke to the kids about autism. Another parent spoke about cerebral palsy. The social studies teacher's brother-in-law was also there. He has Down's Syndrome, and he talked about participating in Special Olympics. Then the kids went through a series of exercises that would help them temporarily experience what it might be like to have different disabilities: visual impairment, fine motor challenge, sensory integration difficulty, using wheel chairs, etc. About two weeks later the kids participated in a skat-a-thon and donated the money they raised to either Special Olympics or Safe Minds for autism research. The totals are in, and they raised over $800 for each organization. I am very proud of them. I am proud to have been a part of Disabilities Day with the kids. It's especially satisfying for me since April is Autism Awareness Month. The teachers have asked me to return next year and do it again. I wouldn't miss it. If only I hadn't thrown my notes for the presentation in the recycling bin!

Happy Birthday, Dad

My last post got quite a response. I'm grateful to everyone who took the time to leave comments. I really appreciate the conversation we all had. It definitely gave me some new things to think about. I want to take a short break from the medical debate today to tell you about some great people.

Last Friday was my Dad's birthday. He and my mom live right next door. Yes, it's a little like Everybody Loves Raymond, but not exactly. In a post from January I told you about my mother-in-law, Paula, who we lost almost a year ago to lung cancer. When she moved here with her husband to help us, lots of people packed up their things. My mom and dad packed up their stuff, and left the house they had lived in for 38 years, in order to live next door to us so they could help, too. We all moved to a new subdivision together, and we all live on the same street within five houses of each other. I have the greatest support system in the world. In honor of my dad's birthday, I want to tell you a little bit about them.

My mom and dad immigrated to the United States in the 1950s. They both came from Romania. They never met each other there, though their home towns are not very far apart on the map. They met in Chicago through mutual friends, while my mother was standing on a street corner with a friend waiting for a bus. They both learned English, worked very  hard, and knew how to save for a rainy day. We did not live an extravagant lifestyle growing up, but we were comfortable. We were taught to value education and hard work. We were taught that freedom is a privilege, and with privilege comes responsibility. We were taught to love this country. They really have lived the American dream. They bought a home, had their own business, and put my brother and me through college without student loans. They have been married for over fifty years, and they are still each other's best friend. What an example they have set for me over the years.

My parents are still behind me every day. They could be in Florida or Arizona, but they're not. They are right next door. They are right here when I need a baby sitter or a listening ear. They have mastered the GFCF diet for Beau, and they can navigate the supplement cabinet in my absence. They have driven Amber to and from school, girl scout meetings, swim practices, and friend's houses when I couldn't do it. They have watched Beau so I could attend her swim meets and school plays. They adore Amber and would do anything for her. They love to be with Beau; he just hangs on them giving them hugs and kisses. I like to think he keeps them young. They have helped financially when Beau's medical and therapy bills added up to more than we had. Almost every week while I am at speech therapy with Beau, my mom will let herself in the house to do dishes and wash the kitchen floor. They have cut the grass, trimmed the bushes, and pulled weeds in my yard, so the neighbors wouldn't think the Adams family was living here. I'm so lucky to have such devoted parents. I'm so lucky.

Happy Birthday, Dad. I love you. You, too, Mom.

Thanks for stopping by. Linda

Not All Autism Is Equal

I had the chance over the last few days to click around the internet and check  more autism sites than I usually do. I have read all kinds of information about autism awareness, education issues, biomedical treatment, legal issues, political battles, and, of course, I have read lots of parents' blogs. I have spent quite a bit of time on neurodiversity sites trying to understand their point of view. The same thought keeps surfacing in my mind. Not all autism is equal. This is not news to most of us. Just like each person is unique, so is each person with autism. We call it a spectrum disorder. The severity of the disability can range from mild to profound. There are autistic individuals with tremendous intellectual and verbal skills. There are autistic individuals who are nonverbal and are classified as mentally retarded, like my son. We use descriptions like high functioning and low functioning. Some autistic children crave sensory input, and some children avoid it at all cost. When you compare biomedical profiles, they are not all identical. There seem to be different biomedical subsets that individuals fall into based on digestive function, viral response, and immune system function. Or should I say dysfunction? All of this measurable dysfunction can be mild or severe as well. Not all autism is equal.

I know lots of families with autistic kids, and I often visit the blogs of other parents of kids on the spectrum. The truth is I don't even relate to some things I hear and read. My ten-year old son is low functioning. Essentially he is nonverbal. He does not attend school; we provide a one-to-one home floortime program. His sensory needs are huge and interrupt therapy constantly. He has only just begun to be interested in other kids his age as playmates. He is not working anywhere near his grade level. We are working on pre-school/kindergarten skills. I have to admit that I am jealous of the stories I read on other blogs: attending school, eating in restaurants, participating in sports, working on friendships, having conversations. I want my son to do all all these things. I don't want to minimize other family's challenges. I know all families with autism struggle with the disability, and it is painful. There is nothing easy about it. But I still wish my son could do the things that other children with the same "label" are able to do. So in my mind, not all autism is equal.

Then I wonder. Is that part of what the disagreement is about? Is the neurodiversity group speaking from the high-functioning end of the spectrum? Is the pro-cure group coming from the low-functioning end of the spectrum? Do we really understand each other? We are all talking about autism, but not all autism is equal. Do we really understand the challenges of each other's children? It's like we speak the same language and use the same words, but is reality being communicated? Whos on first. Whats on second. My child has autism. So does  mine. Sounds the same, but it isn't. Not all autism is equal.

Thanks for stopping by. Linda

Autism 101

Last Friday I spent the afternoon with 120 seventh graders. Amber's class was having disabilities day in preparation for an upcoming fundraiser. The afternoon was broken up into four 30-minute periods. Groups of 30 kids rotated between four different rooms to hear about three different disabilities and then have a hands-on experience with what it might be like to be disabled. I spoke about autism. Another mother and her son, who has cerebral palsy and is in seventh grade, spoke about his disability. The social studies teacher spoke about Down's Syndrome, and his 24-year old brother-in-law, who has Down's, joined him to talk about his experience in Special Olympics. The hands-on time consisted of three stations. The students were blind-folded and then had to make a peanut butter and jelly sandwich, experiencing visual impairment for a short time. They had to put on oven mitts and do puzzles, experiencing sensory/fine motor issues for a short time. They had the chance to use wheel chairs and maneuver around the classrooms and halls, experiencing a bit of what it would be like if they lost the use of their legs. The kids are doing a skat-a-thon later this month and they can donate the cash they raise to autism research or Special Olympics. It was a great afternoon. I think every middle school in America should have disabilities day.

I did some casual data gathering when I talked to them about autism. About 50% had never heard of autism.  Most kids who had heard of autism thought it was "like the guy in Rain Man." Ten to fifteen percent knew someone with autism. The teachers wanted me to focus on what life is like with autism, what it might feel like to be autistic. The truth is I could probably have talked about autism easily for two hours, but with only 30 minutes we focused on sensory integration: what it is, what it might feel like for an autistic person, and how it would be difficult to navigate the world when your sensory system is on the blink. I ended by talking about Jason McElwain and his stellar basketball performance a few weeks ago. Many of the kids had heard the story on the news, and I think Jason McElwain is an excellent ambassador for autism.

I have to tell you, public speaking is not part of my life. I experienced a surprising number of butterflies in my stomach beforehand. When I finished the afternoon, I felt very happy and satisfied. I do believe everyone learned a lot that afternoon. I felt like I had participated in something important. I would do it again in a heart beat.

Thanks for stopping by. Linda

Just a Little Pixie Dust

I think I have mentioned before that our little boy resembles Peter Pan in many ways. He even likes to fly. Here is Beau in our "crash" room. He loves to "fly" off  the top of the loft bunk bed that we have and land in the bean bag chairs, poof chair, and all kinds of cushy stuff waiting for him below. I love the "crash room." We live in our house a little over three years now. We finished two rooms in the basement. One we call the playroom; it has a swing hook up and lots of shelves with developmentally appropriate toys. The other one we call the "crash" room. It became necessary when Beau started jumping off the kitchen table several times a day. Without a parachute, it's really not a good idea. Oh, those sensory needs! I have come to love this room. It has a low bunk bed with mattresses on top and bottom.  You can jump into a ball pit from the top or into all the cushy stuff I described earlier. There are lots of stuffed animals and they often join Beau in "flying" around the room. There is a TV hung on the wall. We can all be down there together as a family, watch a movie, and Beau can do whatever he needs to do to feel good. He has therapy down in these two rooms all day long (until the weather turns warm, then we live outside). And the "crash" room is a great place for Amber and her friends to have slumber parties. I love the "crash" room. I would expand the Peter Pan metaphor and compare our "crash" room to Neverland, but Michael Jackson kind of ruined that image for me.

Thanks for stopping by. Linda

P.S. We apologize for being absent bloggers the last few weeks. We haven't posted since mid-February. I hope you  missed us. Hal is getting ready for an art show on the 17th and 18th, requiring more preparation time than we actually have. Beau has a new communication device, requiring lots of cutting and pasting pictures to boards, and then following him around with it.  I am preparing a talk on autism that will be presented to 100 seventh graders on Friday, which is making me more nervous than I had anticipated. Amber's class does a fund raiser each semester; last semester it was the Red Cross and Katrina. This semester I suggested autism research. So on Friday I tell them about autism. I'll let you know how it goes.

Trent's Prints

We love art at our house. That's not a secret. If you look around our site long enough, you will learn that Hal is a professional artist. I don't think I have mentioned it before, but I was in art as well before the kids were born. But I don't want to talk about Hal's artwork, or mine today. I want to talk about an artist named Trent Altman. I saw his paintings for the first time at an autism conference here in the Chicago area. I was blown away by them. His artwork is colorful, expressive, joyful and unforgettable. Trent has autism. He is 28-years old and lives in Kentucky. Trent has a job and lives in independent assisted living with a roommate. And he paints these beautiful pieces of art. I fell in love with his work. This past Christmas I bought 17 packages  of notecards with his paintings on them and gave them to friends and family as gifts. I love supporting other artists. I especially love supporting Trent's work. His story is inspiring and one worth sharing. Please check out his website

What The Bleep Do We Know?

Friday night we saw the most amazing movie. It's called What The Bleep Do We Know? We borrowed it from our local public library. Have you seen it? If you haven't, you must. Hal, Amber and I watched it together and it was profoundly mind bending. It's about quantum science. Don't let your eyes roll back into your head. They make it accessible to mere earthlings. If I can get it, anyone can. The movie is intelligent, inspiring, funny and unbelievably thought provoking. The concepts coming from quantum science can impact our every day lives. After the movie was over we had so many questions and new ideas; the three of us had the most interesting conversation. When we got up Saturday morning we all still could not stop talking about it. We were so interested and inspired that we felt compelled to buy it so we can watch it over and over again. We really want it to sink in.

Those of us with autism in our lives feel challenged. Attitudes, thoughts and emotions are powerful things. Quantum science has something to tell us about all three. This information gave us a better understanding of ourselves, our biochemistry, our world, our universe. Knowledge is power. So find it at the library, Blockbuster or Amazon.com, but find it and watch.

There is also a website you can check out at www.whatthebleep.com

Thanks for stopping by. Linda