There's a lot of bad things about autism. As The Autism Coalition put it in their powerful TV spots,

It's as if someone broke into your home and stole your child's mind and personality, leaving their bewildered body behind.

But here's one small good thing about autism: you can't just take the defaults. No matter what life situation you are in, if you have an autistic kid as part of it, you can't just sleep-walk through it.

We recently celebrated my autistic son's Bar Mitzvah. We had no temple to help us (they were "willing", but half-hearted at best), so we wrote the ceremony ourselves. We had a knowledgeable friend make up a cassette with Nat's part on it. We worked with the rabbi who married us to create the service. We chose parts to keep in, and parts to leave out. We chose a Torah portion that spoke to us. We wrote our own parents' blessing.

It was a great celebration, all the more so because we had created it ourselves out of whole cloth. If Nat had been a typical child, we could have made as personalized a ceremony for him, but would we have? There are many things competing for our attentions, and it would have been easy to follow the crowd at the temple, with the rabbi dictating the service, the torah portion chosen by the date, and so on.

Maybe I'm over-estimating the extent to which a typical Bar Mitzvah is created around you instead of by you. Maybe I would have jumped whole-heartedly into hand-crafting a ceremony for a typical child. I don't know.

What I do know is that raising an autistic child is a custom experience for every parent. There is no neighborhood school the child will go to as a matter of course, with a curriculum printed up by the town. There is no movie that opens on vacation week that he'll see because all the other kids are seeing it. There's no music group that he'll like because all of his friends like them. There's no camp he'll attend because the other moms in the neighborhood think it's a good place.

So every aspect of Nat's life is carefully orchestrated by us. His school was chosen from the dozen special programs we've visited over the years. His curriculum is decided by a team (including us) every year. Trips to restaurants have to be carefully gauged with regard to mood and menu. Weekend recreation tends to be odd hobbies like riding the T, or specially-staffed activities some distance away.

Hikers talk glowingly about taking the absolute minimum with them, and carrying it on their backs. Each possible item is carefully considered to decide whether its utility is worth its weight. Everything has to fit into the backpack and be carried. If it isn't useful, it isn't taken. Nat's life is like that: his backpack is extremely limited. There's only so much we are going to be able to pack into it for him, so each item has to count. Does he have to learn to do multiplication by hand? No, use a calculator. Does he have to learn how to define words? No, he needs to converse. Does he have to learn to tie his laces? Velcro to the rescue.

Not only Nat's life, but ours, and our other children's, need careful planning. I'm reluctant to work long hours at the office because our home life can be demanding, and my wife needs backup. Business trips are never extended with side trips. There are specialists to consult, doctor's appointments to attend. My wife deals with the typical doctors herself, but we always attend specialists' visits together.

It was either Socrates or Plato who said, "The unexamined life is not worth living". There's special meaning to events that have been carefully planned and thought through. In any life, there are hundreds of choices every day, and most of them have to be made by habit, or we'd never get anything done. Even most of the examined life is habit, by sheer necessity.

But for most people, the degree of examination is a matter of choice, a reflection of your interest in introspection and self-awareness. Most people can adjust their level of self-examination to balance the effort with the reward. With an autistic child, there is little room for laying back and letting things be. "Go with the flow" doesn't usually apply.

You hear stories all the time of people who've had near-death experiences (cancer, accidents, whatever), and how it made them stop and reconsider the choices they've made. How they've been woken up from their sleep-walking existence, and how they feel more alive than ever.

I'm not going to claim that having an autistic child is a wonderful, life-affirming experience, that every day is a new beginning, that it makes me feel more alive. On the whole, it is a wearying, grinding, frustrating experience. It means constantly re-evaluating possibilities, (usually) lowering expectations, and planning for the worst.

But it forces you to think hard about parenting. I think even the choices we make for our typical kids have been made more deliberately because of our experience with autism. What are the important things in raising a child? How important is it for them to be like others? What do we really need them to know by the time they reach 20? How can we make them more flexible, more empathic, stronger?

The autism has made life harder for our typical children. They have to put up with his difficulties just as we do. And that brings only more parenting choices. How much should the typicals bend to accommodate the atypical? How much must the atypical try to act normal? How much extra responsibility can we expect the other kids to bear because of the autism? Does it broaden them or burden them? These are all questions whose answers lie at the end of a long philosophical process of deciding what is important and what is not, what is serious and what is trivial, what is permanent and what is fleeting.

If Socrates had had an autistic child, I imagine he would have also said, "The fully-examined life is an exhausting pain in the ass". I would love to not have to carefully orchestrate every aspect of Nat's life. I would love for him to be able to walk outside and play with other kids on the street. I would love for him to be typical.

But he is not, and that will not change. So at least I can take pleasure in the care that we exercise in arranging his life, and ours around his.

Father's Day, 2003

See also

  • Nat's World, a visual photo game I wrote for my autistic son.
  • My blog, where other similar topics are occasionally discussed.
  • My wife Susan Senator's site, which includes many more pieces about autism, much better written than this one!

Comments

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Scribbles 10:42 PM on 19 Nov 2003

You've very nicely described the routine in my house. My son, Garrett, is also autistic and as you pointed out, each day becomes a series of carefully considered events, accompanied by only the necessities. While others may be able to live their lives with a degree of spontaneity, our choice of activities must constantly be considered for their potential impact on Garrett and anyone he might come into contact with. Resturants are absolutely out of the question, as is any environment where quiet and decorum must be observed. For Garrett, it's a situation fraught with sensory overloads, which makes for a difficult experience for everyone. These kinds of things are not in the realm of experience for the average parent, as you have pointed out.

One of my son's stims is climbing and running. He is an escape artist of some distinction, as well, having already managed to push open an already partially open 1st floor window, pushed off the screen and leaped out, bare foot, to the landscaped bed below. Once outside, he ran to the driveway and helped himself inside our Explorer (which is usually inside the garage or, if not, is usually locked) where we discovered him only a few minutes later. This even took him only a few minutes to complete after he'd left the dinner table to play in the den. In addition, it was only 3 days after he'd disappeared out of the breezeway, where he'd been watching TV. He'd been last seen there less than 2 minutes before disappearing. What ensued was 30 minutes of sheer terror, running (literally) through the neighborhood, picture in hand asking if anyone had seen him, explaining that he doesn't speak (in a conventional sense) or answer to his name, even though he is 6 years old. A tearful, terrified call was made to 911 when our search turned up nothing.

I found him myself just as the police were pulling up to the driveway. He'd gone down to the end of the cul-de-sac and let himself into a friend's house. He was playing peacefully in her kitchen, blissfully unaware of the whirlwind of activity he'd generated and unconcerned about why Daddy had tears streaming down his face.

Security measures on the order that we need to consider daily are rarely the stuff of normal parenting, let alone all of the other things that come into play with autism. It's an experience that's difficult to convey to others, but one I'd give almost anything to never have had at all.

Autism, for me, is a double-edged sword. With it comes all of the issue, problems and quirks that autism is known for, but along with it comes an appreciation for what "normal" life can bring, for what is lost to us, as a family, but also with it comes a humbling sensation that I've never been quite able to clearly articulate. I feel it when I'm with my son, one on one, engaging in some senseless play that only he and I engage in. I'm absolutely sure autism has made me a better father to my daughter as well, because I think I'm more aware of the details of life, more so than I might have been otherwise.

I wish you only the best for you and your family.

Scribbles

[gravatar]
lucky 10:54 PM on 17 Jan 2004

dear mr.batchelder,
it is a very interesting daily routines you've described on the story. it makes me happy that there're still some parents who considered their autistic childres as gifts. i live in Indonesia where there's still a lot of people who doesn'n dare to say that they have an autistic children.
I'm now studying psychology and going to make a thesis about mother's role in shaping playing process in autistic children. i really hope you can help me with you and your wife experience in nurturing Nat.
I hope my english doesn't confuse you.
it's a pleasure to read your story, and i wish the best for you and your family.

[gravatar]
friend 9:31 PM on 6 Feb 2005

I recently read Temple Grandin's book "Thinking in Pictures" that describes her growing up as an autistic child. I found it very inspiring. If you haven't already had a chance to read it, you might find it interesting.

I wish you and your family the best.

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nursemom 11:56 AM on 15 Nov 2005

Dear Mr Batchelder- I am a school nurse in a small town of MA. Our population in school is changing, we now have 6 children with autism integrated into our program. I have been feeling like I am not educated enough about autism, so I am in the process of reading your wife's book. It is overwhelming and painful to read, it is also a joy and I feel it should be required reading for everyone working with special needs children.
It is easy to research and learn the clinical facts about autism, but I don't think that leads you to an understanding of what these kids need from the world. Warm wishes to you.

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angel eyes 10:07 AM on 28 Apr 2006

I am happy to see that I am not the only one who feels and thinks that having a autistic child is a gift ,I one time went to a support group meeting parents dealing with autism and alls I heard all nite was why me not how can I help my child .Shortly after the meeting a parent came up to me and said I am sorry ,I replyed for what,he said your daughter being autistic .My reply was said in disbelief because he was a particapating parent in a discussion .I turned around and let him know that there was nothing to be sorry for my daughters is awesome she over comes and takes on her challenges by her self every day just getting up for school in the morning is a a every day challenge ,my daughter is asburgers autism ,high functioning every day is a new day ,if she can deal with it then who am I to feel bad for my self ,I feel bad for her because she has to deal with what people consider normal and its always going to be a up hill battle for her .One thing I know is shes a fighter and at the end of the day she a litle champ because she takes it and still keeps trying .she has showed me a lot in the past several yrs .She is my little hero .The one thing I would like as every parent dose of a autistic child is to know how and why but only to give answers to her I would and will never want to change her ,shes awesome just the way she is .

[gravatar]
Jen 11:45 PM on 9 Jul 2006

It's wonderful to see a father so full of joy for his child! You truly show your love for your son in this article. Not because he's autistic, but because you love him.
It's wonderful indeed to see such love.

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diana 1:06 PM on 15 Jan 2007

i celebrate your life and optimism.
thank you for sharing Nat and your family.
my prayers are with you and your family.

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Heidi Lerner 2:55 PM on 15 Apr 2007

Just wondering if you can give us an idea of the service you put together for your son. Our son will become a Bar Mitzvah on May 12, 2007. Unfortunately it will not be held in a temple since the Rabbi didn't understand the needs of our son. We are having a very close friend who is an assistant principal of a Hebrew school do the service. Our son is 12, but developmentally 4. He was recently diagnosed with a rare chromosonal disorder and is one of 6 in the world. We have toaught him the 1st blessing before the torah and we are working on the second. We would like it to be special and spritual at the same time. We have about 30-45 minutes before he loses concentration. Any help would be apreciated.

Thanks,
Heidi Lerner

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Mike Austin 12:21 AM on 6 Mar 2008

Mr Batchelder,

What a great outlook on life and Nat is lucky to have you. Society is still learning about autism and some are still unfamiliar with it. Even the company I work for just recently added Autistic Child road signs to their website which may be of interest to your readers. Road signs like these where unheard of 3 years ago, but as time passes, society is becoming better informed. Keep up the good work!

http://www.usa-traffic-signs.com/Safety_s/41.htm

Mike Austin
USA Traffic Signs

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Thomas D. Taylor 5:47 PM on 20 Sep 2008

People wishing to learn how to transition their autistic children back to school or into a new school might benefit from listening to the following free audio podcast put out by Midnight In Chicago:

"Transitioning Autistics Back To School"

It can be found with many other Autism Spectrum Podcasts at www.mic.mypodcast.com

[gravatar]
cherrie 7:24 PM on 27 Mar 2009

Autism is only one aspect of total character. It does not define as a whole person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that you see first when you meet them, but they are not necessarily what you are all about. Love and respect is the real meaning of autism.
http://www.themyxscene.com/tnomeralc-web-design-toys/html/

[gravatar]
Dave 4:44 AM on 9 Aug 2009

Ned,
I read Susan's book - borrowed it from our local Autism Association. I finished it yesterday, thank you both for sharing your experiences with us.

We have three boys aged five, three and a half and one. Our eldest was diagnosed about a year and a half ago - but he seems to be reasonably high functioning and we now have him in an early intervention program - but we have to keep an eye on him whenever we go out because he runs off occasionally - fortunately he is pretty predictable.

One problem that we face is that our three year old tends to get treated as if he was a lot older - it is hard to remember that he is so young when his behaviour is often more mature.... too easy to get upset when he resents his older brother getting special treatment...

[gravatar]
Jorge Valiante 8:34 AM on 9 Mar 2010

Thank you very much for this post. I fully agree with you.


Jorge Valiante
Proudly father of Francisco (6 years old, autistic) and Renzo (3 years old, "normal").
Computer Engineer.
Python fanatic.

[gravatar]
Steve Edelman 7:56 AM on 13 Jul 2010

Thanks for posting this. I just had a call from a concerned father. His autistic son has been scheduled for a Bar Mitzvah next year, and his dad asked for my help. I am a psychologist, and an active Jew who participates almost every Shabbos in services. Both father and son have seen me, and believe that I could help. They are not certain that the Rabbi would. My email address is SEDELMAN001@nc.rr.com Please specify that you are address the this issue in the subject line, so that I will open your response without deleting it. I want to help this boy as much as I can. I love autistic children, and frequently work with parents and children who have atypical behavior.

[gravatar]
viv searle 5:56 PM on 3 Dec 2011

Hi I just wanted to say that I really enjoyed Susan"s book.
Viv Searle

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