Boy Alone. But Not for Long.

Last week, Time Magazine ran an article, "Growing Old With Autism," featuring Karl Taro Greenfeld's new book Boy Alone, a memoir about growing up with his brother, Noah, who is severely autistic .

I met Karl last year. He wanted to ask me a few questions as part of his research. (The crazy mother point of view?) We sat in the lounge of the Algonquin hotel in New York, home of Dorothy Parker's (in)famous Round Table. His father, Josh Greenfeld, wrote three books about Noah in the 1970s and '80s. I borrowed all three from the library and read them before we met. I was appalled at how little has changed in mainstream medicine regarding autism in 30 years.

As an autism Mom (I have three girls on the spectrum), I felt an instant kinship with Noah's mother, Foumiko Kometani, who tried every treatment available at the time -- including the "new" vitamin therapy. She was one of the first Mother Warriors, to borrow Jenny McCarthy's term for parents of autistic children who are unwilling to sit back and let the professionals tell them there is no hope for their child.

But Noah didn't get the fairy tale "HEA," as it's called in fiction -- the "happily ever after." Not all children do. Some, like Noah, don't even come close, despite their parents' Herculean efforts. Children with autism grow up, however, and the reality of full grown adulthood will replace the ability to wrap your arms around your small child and protect him from the world, and himself.

When Noah was born, autism was as exotic as the Dodo bird. Not so today. And yet, we're still in the dark ages when it comes to information. Just last month, an "autism expert" (and neurologist) told Larry King viewers that "autistic people outgrow their symptoms in many cases." Is he kidding? Other professionals with a national platform still deny that there is an autism epidemic at all.

The current awareness campaigns all feature bright eyed, smiling children, usually under the age of six. Early diagnosis has been the push. But what of the adults already here, like Noah? And the kids racing out of their teens and adulthood right now? Boy Alone offers a stark look at the reality many of them face. And it doesn't belong on a Hallmark card.

It took guts to write this book. (And I don't mind telling you, it takes guts to read it.)

Boy Alone is a must-read no matter what your approach to autism treatment, your thoughts on cause or your desire for (or lack thereof) a cure. Even those of us who believe that we can move our kids up (and off) the autism spectrum know that in reality not all of our kids will capture the brass ring. It's an especially important book for teenaged (or older) siblings to help them deal with their mixed emotions.

This week, I'm off to Chicago to speak at a conference called Autism One. The New York Times recently called it "an anti-vaccine conference" in an effort to diminish its importance. This year, Autism One is offering a "Residential Think Tank" with bright minds from around the country.

It's time to stop acting like the grasshopper and become the ants to prepare a viable future for our loved ones. The boy is no longer alone. And neither are my girls.

Comments

[toxicbrainpoison]

Did anyone see that amazing tv special about autistic people who could communicate via keyboards? It was really enlightening. These people are thinking and feeling they just have a different limit for stimuli than average people do. After watching it I truly felt like this is an oppressed minority in our society who deserves to be understood on their own terms. There is such brilliance in the autistic community.

[Liquidambar]

Pay attention to the comment to Rmoffi, sounds like a heartless, typical peditrician who has been trained and entrenched by the medical schools, never had a creative thought or independent thought, ever. He tries so patiently to explain in such a logically manner. My peditrician explained it just as logical to me too: all children are vaccinated, and of course all children are not healthy, soooo if some of them have some neurologically issuses their parents are of course going to blame the vaccines. Yeah, I heard that before, I heard it in college as I was majoring in microbiology. My professor said the very same words. Only this time when I heard the speech from my peditrician, I heard it as a Mother who had watched her nine month old son; only six hours after his DPT shot, spike a fever, and have a stroke. I just found out that the autism rate is not 1 out of 150 but closer to 1 out of 67. Let's all just have autism, then we won't have to hear any more logical thoughts, that are not really so logical.

[thereiderfamily]

Kim,

While I agree that a blanket statement such as that made by on Larry King is unproductive and even hurtful - I don't think it should be dismissed completely. Although we implemented some mild biomedical and traditional interventions for our son, I fully credit maturation as the reason behind his tremendous gains. He went from severely affected at 2 years old, to high functioning by the time he was 5. Some children DO outgrow autism (and in most cases, just the severity level) - and the reasons why are unknown. I believe it has something to do with the miraculous power of the body (and brain) to heal itself - as long as the proper nutritional supports are in place and further assaults are halted. There was a hearing in New York where a pediatrician spoke of his observations being 'when children stopped being vaccinated, they got better'. That statement echoes in my mind frequently when I see two classmates at my son's school. They were on par with my son's level of impairment at age 2. My son has gotten better, they still do not speak. The only tangible difference is that my son's vaccinations ended once he was diagnosed at 13 months. The parents of these children continue to vaccinate, even with yearly flu shots.

I just think that the possibility of a child outgrowing their symptoms, or getting better - should be added to the list of everything else that offers "hope".

[Kim Stagliano - Huffpost Blogger]

Outgrowing is fine. We'd all welcome it. And since our kids are actual humans - not the aliens outside of the confines of traditional medicine as so many docs would like us to believe, they will, like every child, have some forward development.

But Dr. Wiznitzer was implying that you don't NEED to treat autism because kids will outgrow it. That's a very different kettle of fish. Some people go into remission for cancer too. But a medical doctor would never advocate "don't treat it" on national TV.

But with autism? Don't bother. I strongly disagree with that message. Parents need to act early and intensely to help their kids.

Thanks.

Kim

[commenter314159]

Was that really what he was implying? Do you have the entire quote or know where I can get it?

[Truth2009]

Kim,

Thank you so much for this story. I will most likely beg someone else to read Boy Alone and give me the highlights. I know I am not strong enough yet. I'm at the stage where wrapping my mind around the future means sacrificing today...I have had days where the greatest battle is fought in my head even before my first cup of coffee. I spent a whole week as an insomniac trying to figue out who would take our Noah if something happened to us, only to determine the answer is "no one".

Thank you for always balancing hope and reality in your writing...

Best, lj goes

[mikies]

Kim, your writing evokes so much heart ache about the present and the future. Noah's story is seeing and feeling the uncomfortable pain of the future. We are headed for a collision and the band continues to play on.

You mentioned in your comments, "angry ghosts" will haunt those who harm our kids. At the rate of 1 in 150 or 1 in 98 or 1 in 38, there's going to be an army of "angry ghosts" to haunt those who have put our kids in harms way, or forgotten the oath, "do no harm."

[HarryHofherr]

Kim, I sat in on the residential think tank last week and found it very encouraging. The model from California was great, but seemed expensive. The British program, The Autism Trust was spectacular, but again very expensive and very expansive. It is quite an undertaking. These are two good models for the community to study since time is short, and I'm like everyone else in that I don't want to think about my son living in some medieval institution.

Thanks for keeping it on our minds, where it needs to be.

[all4ben]

Any feed back form the Residential Think Tank at Autism One?

I wonder how many of these adults who never got the services offered today to kids would benefit from a few years of intensive ABA now. If the needed programs and funding do not emerge, maybe that could be an opportunity for volunteerism in America, similar to literacy programs for people in prisons, if you will excuse the awful analogy - sort of a little brother program to look out for big brothers and work on a few skills.

[Barbara Fischkin - Huffpost Blogger]

On behalf of my son Dan who is 21 and has autism, thank you. Just back myself from the Autism One Conference, which covered an amazing blend of issues, including those affecting older individuals with autism - and the international perspective as well. To call it an anti-vaccine conference - as you mentioned one newspaper did - is a gross oversimplification and pure inaccuracy.

[JeanneCant]

Life is full of bitter-sweet moments, but this is by far the most bitter-sweet: Having a child who has one foot out the window, and I'm pulling with all my might; but, as I look over his shoulder I see all of his friends who aren't near the window. Then looking back over my own shoulder I see the faces of my friends, and I am struck by the overwhelming sense of loss. But I see they all have a hand on my shoulder and they are helping me. I realize the collective strength of the autism community is what is enabling me to free my son.

This is why we need to make sure, as a community, we are not walking away once our kids have "recovered." We need a new movement, one of great numbers, great strength and determination to ensure all of our children receive the care they deserve. And stories such as Karl's, Kim's, Barbara's, Karen's, and so many others... these stories are the fuel, they are reminders of WHY we must continue fighting for our children.

I say "our children" because I have learned in our community that my child is your child and your child is my child. We laugh the same laugh, feel the same pride, cry the same tears, yell with the same anger, whether it is for our own child or a friend's.

Kim, thank you for writing this piece.

Love.

[2bsure]

It is said that 3:00 AM is the "Hour of the Wolf"; the time when people awake and are haunted by their worst fears.

As a parent of a child with autism, a child who was happy, gregarious, verbal, connected and who lost it all after her MMR, every hour of the day and night is, for me, the hour of the wolf.

[Kim Stagliano - Huffpost Blogger]

I'm so sorry, 2bsure. I am.

Kim

[rmoffi]

I wish I shared your opinion that doctors, and, more importantly, public health officials... want to find the "cause" and "treatment" of autism as badly as do parents. For a number of years they have been loathed to support pending federal legislation that seeks to fund a "vaccinated vs. unvaccinated" study to ascertain, once and for all, if BOTH populations have suffered the same, inexplicable, dramatic increase in chronic autoimmune disorders that are rampant among THIS, arguably the most heavily vaccinated generation in our nation's history.

Do the study...prove the vaccines are as "safe and harmless" as they insist they are. What are they waiting for...and....more importantly....why have they waited this long already?

[commenter314159]

That kind of study would be highly unethical because the risk to the non vaccinated children is too high to justify the possible outcome. I know you don't feel this way, but that is the current medical opinion. There are studies that compare the outcome of children in countries that have different vaccines schedules than th eUS and these studies are largely negative.

[carmel66]

This thought, was at one time valid. But now, there are huge pockets of non-vaccinated children, and parents who willingly choose not to vaccinate. Examine these families, these children. And the number of unvaccinated will rise until the vaccine program reverts back to saving lives vs. making money. If you don't understand that it's about money - you are not paying attention.

[Twyla]

Here is another article by Karl from a few years ago: http://www.time.com/time/covers/1101020506/scbrother.html

[Rileysmom1204]

Thank you Kim. After a very long email I sent, (you know which one) I popped over to my in box and seen that HuffPo had alerted me to a new story written by you. I started reading and realized that I had just put all of this in that email and didn't realize. My fears run so deep in the core of my body for my son that I can't put them into to words. My youngest is 3 and she realizes that Riley is a special boy that needs special treatment. An example, yesterday was Memorial Day and we were leaving to go to my sisiter in laws for a picnic. I was busy putting things in the car and Riley was walking across the yard. My youngest ran to him (she is tiny compared to him) grabbed him by the hand and said "Come Wiwee, get in the car." I realized right then and there what the rest of her life will be. I can never die. I can never be sick. I can never falter or stumble. I want my son to get better and I don't want my tiniest baby to have this thrown in her lap. A friend laughed yesterday when she cried because Uncle Lee wanted to take Riley home with him. The friend said "You see, he ain't heavy, he's my brother." Pointing to my daughter. Thank you again Kim. I will pick up the book asap.

[carmel66]

amen

[mlinn]

Thanks, Kim, for always hitting the nail on the head. I was able to participate in the Residential Think Tank presentations during Autism One - - I was very encouraged by the vision of the Autism Trust and real world examples presented by the Training, Education, and Research Institute (TERI). The only disappointing thing was the small number of people sitting in the audience. I suppose the main theme of Autism One is hope and recovery, so participating in these sessions was probably a downer to some. I hope we can get more participation in the future, because the old paradigms and service delivery models depicted in Noah's story need to change. I am hopeful that they will and will work as hard as I can to make the new visions a reality. Maybe this issue is one that can better unite the autism community in the future--

[autmarfcvsmom]

Thanks you so much Kim! My son on the spectrum just turned 10 and this has been on my mind non-stop since I realized my baby is just as close to eighteen as he is to two (and two seems like it was here moments ago). I fear sometimes that I've unknowingly burdened my four year old with the care of his brother.
When they manufacture the magic pill that will ensure my husband or I outlive our son, I'll be first in line.
I look forward to reading the book and providing my son's school library with a copy.

[Kim Stagliano - Huffpost Blogger]

I hear you. I wrote about dying a couple of times here at HuffPo. And I spoke to my priest about it - "How can you tell me I'll be happy as a clam in heaven? If I leave my children behind, at the mercy of the world, I will be in hell, regardless of cloud placement." He was sad, and tried to allay my fears. Faith is wonderful. Reality? Not so much. Most of us autism Moms have agreed we will return as angry ghosts, and haunt anyone who harms our kids.

I love your manatee photo. That's my daughter Gianna's favorite animal. She carries one around with her. It looks like it go hit by far too many boat propellers!

It's nice to hear from you again. Thanks for commenting.

Kim