When it Comes to Autism, All States are Not Created Equal

The Reason Why We Fight

Despite the recent proposals by various states to pass or introduce autism insurance reform, the reality is that most states in the country are still extremely deficient when it comes to providing autism-related funding and services. The lawmakers have realized the error of their ways and are now grandstanding before the media (and everybody else) gets a grip on reality about what has been going on.

One year ago, I left everything in Washington State, including my home and older children, to move to upstate New York to get the best possible services for my four-year-old son with autism. Washington is currently ranked 48th in resources for autism and New York is ranked fifth. The westernmost accommodating states are Wisconsin and Missouri. The rest are in the northeast, and include New York, Pennsylvania, and New Jersey.

Add in a tremendously low cost of living in upstate New York (because of the harsh winters), and you have one of the best places to live for autism services. Families have been migrating to these top states for help for the last ten years and thankfully, they are getting it.

In my opinion, Boone County, Pennsylvania, is the number one place to live, hands down. However, the million-dollar Pocono lifestyle and homes are way out of most families’ budgets. That’s why I came to Onondaga County, New York, where my son is receiving up to a half-million dollars in therapy and services each year. 

Australia and the United Kingdom are way ahead of the US in providing proper treatment and therapy to all diagnosed persons with autism. Catching up will be difficult.  At the current rate, our Social Security system (and other government programs) will be bankrupt within seven-to-ten years. The estimates of the well drying up in 2037 are incorrect, and lawmakers know it.

Don’t get too exciting when reading the latest headlines about autism "reform" and lofty promises by lawmakers. These rarely trickle down into hands of a child’s immediate needs. In fact, due to the lack of properly trained professionals, it will take years to see any meaningful difference.

I spent fourteen months advocating and battling for services in Washington State. This is a no-tax state, which was part of the problem. After tremendous paperwork, getting advocates involved, and nasty battles, I ended up with 3 days a week, 2 ½ hour early intervention sessions with unprepared teachers. As a result, we had minimal results and non-productive speech. The teacher and speech therapist meant well but lacked the training and skills needed to be effective. I appreciated their efforts, but the reality was that my son was not thriving.

The school district did not want to give my child summer school or an ESY (Extended School Year). This was critical because it’s been proven that without three or more days of a school program and therapy, a child with autism will show regression. As a result, an effective autism school and/or early intervention program will be year-round and not just occur during the regular school year. Study the IDEA (Individuals with Disabilities Education Act) laws and know them before your first IEP (Individualized Education Program) meeting, so you are well-informed about these issues.

What Washington gave me in place of not having a summer program, was a self proclaimed "Autism Therapist." After four sessions into her therapy and personally witnessing her slamming my child into his chair, whiplashing another student, and having zero progress with another, I pulled my child out. She grabbed my arm forcefully as I was leaving with my family, seething with anger and tried to intimidate me saying, “your child is a hard one.” A call to CPS should have been made, but I vowed to focus solely on my son’s healing and not get bogged down in lawsuits or "he-said, she-said" accusations.

Without a doubt, the best programs in Washington pale in comparison to the worst programs in New York.  If that were not the case, I wouldn’t be foreclosing on a half-million dollar horse farm, recovering from a divorce or given away most of my things.

My studies and conversations with other parents and personal experiences have led me to the conclusion that the state you are in will define your child’s future. 

As stated, lawmakers are continuing to hash things out, but these changes will not make an immediate difference when it comes to hands-on therapy.  So if your state does happen to pass laws handing out cash or institute legislative mandates, there is the secondary issue of finding the properly trained persons to address the therapies and services that are being funded.

Don’t believe people just because they are in an administrative or authoritative positions. They are not all bad, but the majority lack the proper knowledge and training. There’s no excuse since the research has been completed and proven.

Your child doesn’t have a lot of time. Moving to a state where resources are available five days a week through a school system should be strongly considered. You need to have access to an agency like Enable, who will bring ABA into your home well after the early intervention period is over.

Forty-percent of non-verbal autistic children will never speak. My son was almost one of them. This high percentage is directly linked to the lack of trained persons and no access to accommodating services in the majority of our states.. 

I cannot explain the joy I felt when two months of New York-style therapy brought out my son’s full speech at three years old. Now, thanks to the great state of New York and the SPICE program, I can finally hear him tell me and write his likes, dislikes, feeling, and fears.

Most importantly, he hugs me, kisses me and says, “I love you mommy, I really love you, I love you forever and ever!”

Washington State left my son and I with little hope when I was told, “he’s a hard one."  In only 9 short months, the services provided by New York caused me to receive daily progress reports and happy handwritten pictures expressing my son’s love for me.

It’s treasures like these that make moving 3,000 miles away, along with countless other sacrifices, all worth it in the end.

14 Responses to When it Comes to Autism, All States are Not Created Equal

  1. kim says:

    Where is Boone county in PA? Where are the best adult services for low functioning people on the spectrum?

  2. jenny says:

    i am currently living in miami Fl. i move here from new jersey about 3 years ago my son will be 5 in oct.
    well what a big mistake that was! the services here are horrible for autism.
    so i am looking to move as soon as the new school year is over so if you have suggestions
    or more information about the area your referring to i will appreciate it.

  3. Amy says:

    I am in NC and it is horrible. I have an autistic four year old who can’t speak and has a lot of tantrums that started their preschool when he was 3 and they are providing hardly nothing. Also, we receive no other services..there’s nothing here!! He went all summer last year without any therapy or anything. Could you emil me more information about where you are and about services once they are in the elementary school? Also, do you know of any services provided by the state? I’m planning to relocate asap and have been researching upstate NY and WI. However, I’m only able to find limited information. Any help would be greatly appreciated!

  4. lamarie says:

    the services here in york pa is horrible …they never have funds for families with low income i wish i could find a better state than this one

  5. Ali says:

    I have two children with autism and I moved to Il from Northern Fla. The schools here are great and they have out reach programs. Northern IL is worth the move. it is one of the top ten places to live if you have autism.

  6. kadie carter says:

    I live in los banos, ca (merced county) & the services here are horrible. everything is about “the budget” of which there is hardly any. It’s not about the children or there needs. The school coordinators have no problem not complying with IEP’s.

  7. Danielle says:

    I’m so glad that I stumbled upon this information:) My family is currently in Texas, where the ECI program evaluated our 2 year old for a speech delay, dropped Autism in our laps an then offered us 4 hours of parent coaching a month. Luckily, I am from NY and have friends who are behavior analysts in NYC. The state will provide 20 hours of ABA a WEEK, which made the harsh realization of Texas’ incomprehensible services a shock, but not a loss. We are in the beginning stages of planning our move and have hired an independent BCBA to fill in the time between. Thank you for the reassuring words! You are so right… There is NOTHING as important as this time right now for a toddler/child with Autism.

  8. peg says:

    The provinces of BC and Alberta in Canada provide good services. In BC, while the child is under 6, you have up to 22,000 per year of services and you can decide who you hire for what. Once they hit 6, it drops to 6,000 per year of services (OT, behavioural therapies etc). On top of this, if your child is in school, they will get a full-time aide in many cases. If you opt to be a distance learner, your school may allocate a larger budget to you and you are very involved in deciding how to best spend it. Right now, my child is 11 and we get 6,000$ for services through the government plus about $12,000 for services through the school where he is enrolled as a distance learner. We have three private tutors and have had speech and OT services and I got to select who we’d hire etc. I plan his entire education program, teach some subjects myself, and hire others to teach him as well, plus get him therapies with specialists. I’ve heard it’s even better in Alberta.
    Just some thoughts if anyone out there is looking for help and have Canadian citizenship or are married to a Canadian.

  9. Kelly Lloyd says:

    This is for the woman who wrote the article…where in upstate NY did you get such success with services? Buffalo, perhaps? I have to get out of SC!! This is the worst for special needs services. My son’s doctor told me to move to a state more equipped to help him or I will keep battling and still not get services. He is so far behind in school!!
    I hope you get this msg.

  10. Kim says:

    I have an 18yr old son with Autism he is in public school here in Charlotte NC he can stay in school until he is 22yrs old
    I feel he should be more high functioning then he is I am looking to move this summer any ideas for the best cities with Autism services.

  11. Erica says:

    I am so glad to have found this site. I have a 14 year old son diagnosed with PDD-NOS which is on the Autism Spectrum I live in Jersey now but am interested in relocating to Maryland has anyone heard about whether or not the state of Maryland is a special education friendly school system for kids with Autism, especially high school age kids?

  12. Erin says:

    @Erica – I live in MD my now 5 year old was diagnosed w/ PDD-NOS and has been on an IEP since age 2. I’ve found the school system in AACO to be fantastic, the teams that work with my son are proactive, innovative to new and different kinds of therapy, caring, and consistent. I don’t have a frame of reference for other states services but I’ve felt so fortunate that my son receives the support he does.

  13. Keisha says:

    I currently live in Brooklyn NY, an my son receive a lot of services. The problem is he goes to public school and in the Noel’s I feel that they never really do “MORE” for the special needs children. Yes there’re placed in a different district who’s is known as 75 but there lack on teaching is really failing the publisher school system. I am know looking into moving to Pennsylvania or upstate NY. Does anyone know the best part of upstate to move to and as what part of Pennsylvania? Please feel free to email me am looking to move by June or before September.

  14. NM says:

    which school in MD are you talking about, please?
    Thank you!

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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