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Major Metros Top Best Places To Live With Autism

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Most families affected by autism are not happy with the services available in their community, but in a national survey released Friday, residents of some cities appear to be faring better than others.

New York, Chicago, northern New Jersey, Boston, Philadelphia, Los Angeles, Minneapolis/St. Paul, Cleveland, Milwaukee and Seattle stood out as the best places to live if you have autism in the survey conducted by Autism Speaks.

The findings are based on survey respondents who said they were pleased with the services available in their area. Overall, about 75 percent said they were not.

“These survey results confirm what we hear every day from families — that they are struggling to get their children services that are essential to their development and well-being,” said Bob Wright, co-founder of Autism Speaks.

Specifically, two out of three people who participated in the survey said educational services were hard to access in their area, with some saying they changed school districts or employed legal action in order to obtain needed supports.

Respite care, recreational activities and medical care or treatments like behavior therapy were also particularly hard to come by for the majority of survey respondents.

Not surprisingly, those who said they were happy with the services in their community generally were more likely to report good schools and access to medical or therapeutic services nearby.

Nationally, 848 people representing the 48 contiguous states and the District of Columbia participated in the survey which was open to anyone affected by autism for a three-week period in February and March.

The greatest percentage of negative responses came from people in Texas, Virginia, Tennessee, Ohio, Florida, Michigan and California.

Autism Speaks officials emphasized that the findings came from a community survey, not a scientific study, so whether or not a location fared well in the “best places” listing could be skewed by how many responses came from people living in a given area.

“The overall consensus is that people are not very happy,” said Peter Bell, executive vice president at Autism Speaks, who indicated the findings will be used to help understand what’s needed and to highlight the situation to policymakers. “Our only intent here is to create some conversation and dialogue.”

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Comments (6 Responses)

  1. tobeygloss says:

    I find it interesting that Seattle is listed as one of the better cities to live in if you have Autism. We live in a suburb of Seattle, and I belong to several support groups here locally on Autism. I am the parent of an adult child who has HFA. I personally see a huge lack of services for our kids, especially once they are older. The topic constantly comes up in the support groups I belong to too. There are not enough resources here or support. Sure, if you have a small child (5 and under), there are some decent resources if you have the money to pay for them or if you are very poor. If you’re middle income, good luck! Some of the districts around here offer inclusive classes for kids with Autism at the elementary level. However, once your kid gets to middle school those services go bye-bye. Any ancillary services your child might have received when younger usually goes bye-bye too, unless you have the money to pay for it out of pocket. The worst is when your Autistic child becomes an adult. There are virtually no services available to help them. If your child has a severe form of Autism, with a low IQ, you could qualify them for DDD services, but there is a long wait list to get those services. If they have HFA or Aspbergers, about the only thing you can hope for is SSI payments for income (only $674 a month to live off of), and medicaid for medical coverage. No community support to help them find housing that they can afford, no support to help them learn how to manage in the adult world (like bill paying, shopping, taking care of their home, etc), little job prospects either. Eventhough our DVR (division of vocational rehab) helps kids with Autism, they are not trained on the unique issues that come with finding someone with Autism a job. I speak not only from personal experience, but our DVR counselor (who happens to have a son with autism) has told me that she is constantly fighting the system in her office because her office is not trained, nor do the higher ups see the value in the training of their staff on this disability. Our counselor says the placement rate is low, the failures high. She knows it will come to a head soon when the larger number of kids with Autism come to be of age, but for now our kids who are young adults are not getting help! I’m curious to know why the respondants from Seattle think they are getting great help? Must be that their children are very young and have not yet had their services stripped from them because of their childs age… I personally would never have voted for my city if I was one of the survey respondants.

  2. msamericanpatriot says:

    I am NOT surprised that NONE of them are listed in the Southeastern US. This is the WORST place to live if you have autism. They still have the mindset that we need to just be put in a closet/facility and forgotten about. What agencies help us eventually become corrupt in nature with embezzlement charges.

  3. Autisticandawesome says:

    Interesting that Autism $peaks is looking at lack of services, when their whole schtick is to barge into communities with their walks and other events, cajoling people out of their money that would otherwise have gone to support community services, and then using that money for things like genetic testing that do nothing to improve the quality of life of Autistic people today!

    I am also skeptical that major cities where cited as the best places to live for Autistic people. This seems to indicate that they were looking at one dimension only: availability of services. While this is certainly very, very important, there are a lot more things that go into a person’s quality of life. Sensory issues play a big part. Many Autistic people cannot handle living in cities due to all the noises, smells, and stimulation. Did they ask Autistic people, or just parents? (I think I know the answer). The attitude towards people with disabilities of a city or town is also important. How tolerant are folks of diversity? Do people support each other as neighbors? That sort of thing. It reminds me of the article about Donald T, the first person diagnosed with autism, who still lives in his small town he grew up in. There are few services there, but he is very supported by the townspeople and very happy. Don’t get me wrong; I believe lack of services to be one of the biggest problems facing our population. But I think there should be other factors to consider when looking at “best places” overall.

  4. codeman38 says:

    To add to what Autisticandawesome pointed out, they were looking specifically at services for children and parents– while ignoring services for older autistics entirely. It really becomes apparent upon reading the press release for this survey, which describes some of the methodology:
    http://www.autismspeaks.org/press/best_places_to_live_survey_results.php

    The one that stood out the most to me, as an autistic person who’s found the job search process to be quite unfriendly:

    Supportive and flexible employers for neurotypical parents of autistics were a major contributor to the score.

    Supportive and flexible employers for actual autistic people? *Entirely ignored.*

    Personally, I’d consider the latter as being far more important in determining “the best places [...] to live for people who have autism.” But what do I know?

  5. eisralowitz says:

    I have no clue where on earth they got Los Angeles… Oh wait this was an online survey… The majority of families in the LA metro area do not have daily internet access!!! There is an enormous disparity here in LA between the amazing research and treatment given to those who can and will fight and/or pay for it and those who are not so fortunate. For those living near or below the poverty line few services are available beyond segregated special education centers. Most students never get early intervention and are not diagnosed until the age of 4. Parents rarely hear from their regional center case workers and are put on long waiting lists or just not responded to when they request in home services. As for all those wonderful free or subsidized services such as the acting program we all know from “Autism the Musical,” again you need internet, time, and a car. Trying taking your kid all across town to get to free or subsidized activities. The only group who has really thought some of these issues out is TACA who actually has a GF/CF diet for families living off of food stamps.

  6. scrapper says:

    Surprising. We recently moved to Katy, TX, a suburb of Houston. I have been very pleased with the school district, services, activities and access to medical care. Hmm, maybe we are all too busy in Houston, enjoying our playgroups, sensory nights, etc. to take the time to fill out an online survey!

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