Saturday, April 07, 2007

Autism Migrations

One of the themes in narratives about autism is the autism migration theme: families moving, often halfway across the nation, in search of better services, better chances, for their children. A subtheme is the theme of moving from town to town, in search of a better school district, or to live with relatives so there will be enough hands on deck to tend to the needs of our sometimes demanding kids.

Kristina describes the bittersweet of moving from the midwest, where she and her husband Jim had tenure-track and tenured jobs*, to be closer to family and in an area with better autism services. MOM-NOS describes the happy situation of buying a house with her in-laws so that there is a four-to-one ratio of adults to child. A father on the Oprah show talked about giving up the little house he loved and moving in with his mother so that his son could have more care. And recently Jim and Kristina made a similar move because they needed to find a better school.

When we sent Sweet M to a summer day camp a couple of years back, we learned that the town where the camp takes place has the highest precentage of special education and autism kids in the state. No, there's no mercury in the water — there are good services in the public school district. Home resale values in the town have skyrocketed, as that school district became widely known for its programs. (So communities, come on, autism services are good for your real estate values — get moving on better special education services, there's something in it for you.)

At Barry Prizant's autism conference in the fall, many families talked about moving to towns in Massachusetts and Rhode Island where there were better services for their kids than in the towns and cities where they'd initially put down roots. This autism migration isn't exactly on the scale of Steinbeck's dustbowl refugees or the Irish potato famine migrations or the Armenian diaspora, but all across the country families are on the move, looking for services for their kids.

If you have a story about this that you'd like to share, would you post it here? . . . Or email me at mothersvox at gmail dot com? I would like to know more about autism migration.

* Tenure, for those not familiar with academe's arcania, is a tradition akin to hazing wherein after six years of intensive work at teaching, publishing and community service, one can qualify for guaranteed lifetime employment. It's one of the traditions of academe that offsets the relatively low salaries that professors receive (given their years of training and preparation). Although tenure-track jobs are on the decline nationwide as universities use more part-time and contigent labor, for those who have it, it is often hardwon, and hard to give up.


kristina said...

Sometimes I've thought of it as being pilgrims on a long and dusty road----2nd part of Unstrange Minds has a section on this.

(And I am up for tenure next year........!!?!!)

MothersVox said...

Hooray for you being up for tenure next year! That's awesome! Thanks for the tip on Unstrange Minds, Part 2. I haven't gotten through it yet . . . Too much consulting work and too much testing!
I may be up for tenure around the time I'm eligible to apply for Social Security. ;)

abfh said...

In my multigenerational autistic family, the migration has been more along the lines of moving to rural areas when the kids were small, so that they could wander around without too much danger of traffic, etc.

And yes, finding better schools was also an issue sometimes. Not so much for the services (there weren't any autism services when I was growing up, or at least none that you'd want), but for a more tolerant and accepting atmosphere overall.

Anonymous said...

I'm new to your blog, having just discovered it recently as I've been researching autism because we think our two year old may have some form of it. She was diagnosed at 13 months with SPD but the older she gets the more it looks like that isn't all that's going on. Anyway, we recently moved across the country, from Arizona to North Carolina and among the top reasons for the move was for better medical services and early intervention services. We took regular trips to the ER and would wait 16 or more hours to be seen on the weekend with our dehydrated, lethargic little girl. No one could/would help us and most blamed me. We even took her to a different state to Dr. Lucy Miller's center in Colorado to pay privately for two weeks of intensive therapy because the EI process wasn't moving. From the time of the first evaluation until therapy began (by a terrible therapist with a case worker that literally never called me back) it was eight months. And the therapy was a joke.

Since moving across the country and getting her signed up in EI, the process took three months. And half of that was my fault because I had a baby in the middle of that and dropped the ball. The therapy is wonderful and the state is picking up the bill for it because we are on one income and our medical bills exceeded 8k last year that we paid in cash. (ugh - but at least it got us free services!)

Anyway, I say all that to say that we were also afraid of the frying pan thing, but fortunately have found that at least with EI, things have been so much better. I'm nervous about the school system and all that but I haven't heard anything and up until recently didn't think there would be a problem to worry about, but my little girl is regressing quite a bit and so I think it will be something to start researching.

Thanks for letting me write a novel here. :)


I've always threatened to write about our M*A*S*H* move after we discovered that the services we were being offered in our old town after EI were going to be inadequate to put it kindly (nightmareish to put it in proper perspective). Lemme create a draft and see where it goes.

Hi, I'm Bill if you don't know me...


I updated my blog with a two parter of my migration, if you are interested