National organization Autism Speaks recently published the results of a survey of some 800 people about where it is best to live if you have a child on the autism spectrum. US News and World Report points out that the places considered ‘best’ as far as availability of schools, services, medical professionals, and recreational activities are all ‘major metro areas’: New York, Los Angeles, Chicago, Cleveland, Philadelphia, Boston, northern New Jersey, Minneapolis/St. Paul, Seattle and Milwaukee.
Autism is currently diagnosed in every 1 out of 110 children in the US, according to the most recent figures from the Center for Disease Control and Prevention. That is, there are most likely children and individuals on the autism spectrum in every community in the US. The needs of autistic persons, as far as school, services and other supports, can vary widely; it is perhaps not surprising that major metro areas, with more resources and businesses and larger populations, would be places that are ‘better’ for autistic persons to live.
We live in northern New Jersey and moved back here in 2001 (my husband is a native Jerseyan) from the Midwest (where we both had jobs), to find the best education we might for our now-teenage son Charlie. We chose towns on the basis of their special education services exclusively. In New Jersey, services, programs and personnel (as far as level of training and experience) can vary widely from town to town with a few miles. Further, just because a town has an excellent school district for kids without disabilities, or because a town is more economically well-off, it is not necessarily a good place for a child on the autism spectrum or with other disabilities. As far as I can tell, ‘word of mouth’ seems to be the best, if not the only way, to figure out where to move.
The Autism Speaks survey also looks at the availability of respite services and recreational activities and found that families in general struggle to find these—something that more than coheres with our experience.
The US News and World Report article on the survey profiles a family in rural Minnesota, who is considering living during the week in Minneapolis/St. Paul, so their 4-year-old daughter, Brea, can access behavioral services (which have been helpful for my son—actually, we were living in St. Paul when he was diagnosed). One thing I was struck by mentioned in the article was why the Paurus family is hesitating to leave Sebeka, population 710:
Family is the major factor keeping the Paurus family in tiny Sebeka, despite the lack of services. Kristen and Bill grew up there, and both sets of parents, siblings, and plenty of aunts, uncles and cousins live nearby. They pitch in with babysitting, and Brea knows they love and accept her.
While my husband is from New Jersey, his family has not, for various reasons, been able to help out in with things like taking care of Charlie for an hour or two or shopping and housework. My own parents are very helpful in this regard, but they live in California; they visit frequently and we are very grateful for their support. As my son has grown older, it has been harder to find activities and people to watch him, as Charlie has a lot of ‘issues‘ in the behavioral department and is minimally verbal. There is no substitute for family who are more than glad to ‘pitch in.’ Many children on the autism spectrum will need support throughout their lives, so it’s important to have family members who a child is familiar with and who are willing to assist in roles like that of guardian, when parents are no longer able to.
Where an autistic child lives means that she or he will receive varying qualities of education and services. But while metro areas may have the services, they can also be noisy and over-stimulating to individuals who, like my son, have highly attuned sensory systems. Charlie loves the beach for its wide open spaces and quiet (aside from the ocean): Were we ever to move again, besides services and programs, we would also consider things like access to nature (state parks, beaches—Charlie likes big spaces to roam in) and the weather (humidity and changes in the barometric pressure do not agree with him). There’s no geographical cure—and I really do think family are an important factor to consider in the equation about where it is best to live.
Photo by Guy Noir.