Autism. There ARE Best and Worst States!

AUTISM: ‘Best’ and ‘Worst’ states to live in.

If you are wondering if one state is better than the other when considering the rest of your child’s life…the answer is painfully and truthfully, YES!

I was SHOCKED and insulted to read the latest news that the previous comparison of states was ‘out of date.’ This is a significant blow to Autism awareness and treatment and only helps the 42 non-compliant and Autism unaware states to continue to ‘fly under the radar.’

Granted, a county by county and district by district comparison will vary somewhat within a state, but the state by state comparisons are as vast as the Grand Canyon. The outcome of your child’s success will be determined by which state you live in.

What are we comparing, specifically?

A simple phone call to the Special Education Department would be a great start/tool. You will find that there are 8 states where extensive and accommodating therapy is included in your child’s school program and community.

The Medicaid system has put their monies into the schools so that 5 days a week, (and often 5 hours a day), your child’s schedule will include physical therapy, occupational therapy, speech therapy, sensory integration, one on one aids, play/ socialization therapy, etc…Additionally, if you want to help your child at all, you will need to seek out Board Certified ABA therapy! (Applied Behavior Analysis).

Let’s go one step further. You need parent classes. You child needs his ABA therapy to be a MINIMUM of 40 hours a week for 2 years. Your child needs speech therapy to be a minimum of 25 hours a week for as long as it needs to be. You need to be trained to make up the hours your child cannot be in school/therapy.

It is illegal to use a typical day care. The ratios are wrong. Stop dropping your child off ‘willy, nilly.’ Quit your job. You won’t starve. Lose the chip on your shoulder and ask for the help of Social Services, churches and/or food banks.

I am sickened by knowing that 42 states are taking our President’s stimulus money and ‘flying under the radar,’ by not providing even the bare bones minimum services, which will result in despicable results.

The most western of the 8 accommodating states are Wisconsin and Missouri. The rest are in the Northeast including New York, Pennsylvania, New Jersey…

One year ago, I left everything in Washington State including my home and older children to move to Upstate New York. Washington is ranked 48th in resources for Autism and New York is ranked 5th.

Throw in the tremendously low cost of living in Upstate New York, (because of the harsh winters), and you have the best place to get help. Families have been migrating to these states for help for the last 10 years and they are getting it!

Boone County, PA., is the #1 place to live for Autistic resources hands down. However, the million dollar Pocono resort lifestyle and homes are out of most families’ budget. That’s why I came to Onondaga County, New York. My son is receiving a half a million dollars of therapy and services each year.

The other 42 states will be expected to pay for their negligence and ignorance, (per diagnosed and untreated child), an estimated 77 million for the fully assisted living lifestyle required. Talk about short sighted. The lawmakers have realized their errors and are grand standing and back pedaling before the media gets a grip on reality and we all really start screaming.

Australia and the UK are leaps and bounds ahead of the US on providing correct treatments to all diagnosed Autistic persons. Quite simply, our Social Security system will now be dry in 7-10 years at this rate. The ‘well drying up’ in 2037 estimate is incorrect and lawmakers know it.

Don’t get lost in reading law makers political mumbo jumbo. It’s so much blah, blah, blah. These promises rarely trickle down into hands on tools for your child’s immediate needed therapies. In fact, due to the lack of properly trained and Autism aware professionals in our country, it will take years.

If you are reading this the chances are your child has already been diagnosed. You only have until he’s 3, (when 70% of every child’s learning and language foundations are complete), to make a huge difference in his life.

This young age milestone does not mean a child has learned all he will learn. His ‘foundation’ or his OS, (Operating System), is nearly finished. Broken down again, this OS is like Windows 98, XP or Linux, the mechanism by HOW your child will learn is in place.

You still have small windows until the age of 5 to get his system ready. Please keep in mind that Autistic kids can learn everything that typical children learn, but they will need to learn it differently. Autism, unlike nearly every other lifetime disabling condition, can only be helped during a few remarkable young years of a person’s life.

The treatment during this young pre Kindergarten learning age is referred to as Early Intervention. Your child should be in this program 5 days a week by the age of 2. This is the time of CURE. (Cure in the sense of functionality, not independence). This is what you need to be asking the school systems about to make an informed comparison and decision.

If the Early Intervention providers/ school systems don’t have ABA in their current and later programs, with a Board Certified PhD ABA doctor in charge, then MOVE. Get out. Don’t try and piece together some make shift program. Grass roots ABA programs are popping up everywhere so be careful.

Do NOT substitute ‘home courses’ on doing ABA yourself either. Board certified PhD doctors are highly trained professionals and the only ones researched and PROVEN to ‘cure’ Autism.

ABA is NOT something you can just read/study and perform. You might do OK but you will never see your child’s full potential. You are robbing your child. This is your child’s entire future. You can always move back to your devoid State AFTER the services are in place.

The schools may tell you it is OK to wait. They are lying. Why would they do this? MONEY! In some states where the tax monies for a typical child average, (in a Curricular school year, September-June), approximately $5,000, an Autistic child gives their pockets a raise of $14,800! They might send an occupational therapist to your home once a week for less than an hour to grab that amount. This is ‘in your face’, outright negligence.

I spent 14 months advocating and battling for services in Washington State. This is a ‘no tax state,’ which is a part of the problem. After tremendous paperwork, getting advocates on board and horrible battles…I ended up with 3 days a week, 2 ½ hour ‘early intervention’ with unprepared teachers. We had minimal results and non productive speech.

The teacher and speech therapist meant well but lacked the training and skills. I appreciated their efforts but case on point, my son was not thriving.

The school district did not want to give my child summer school or ESY (Extended School Year). It is already proven with Autism that with any more than 3 days without the routine of their school program/ therapy your child will show regression.

All accommodating Autism school and/or Early Intervention programs include year round school! Learn your IDEA, (Individuals with Disabilities Education Act), laws and know them before your first, (and every), IEP, (Individualized Education Program), meeting. You must advocate.

What Washington gave me in place of their NOT having a summer program and refusing to let me attend any neighboring ones, (even within the same county), was a self proclaimed ‘Autism Therapist.’ She has parlayed her ‘old school’ therapy techniques learned from spending 57 “miserable” years with her Autistic brother, into a money making business and a huge title from a national Autism organization…

After four sessions into her therapy and personally witnessing her repeatedly slamming my child into his chair, whiplashing another student and having zero progress with yet another, I yanked 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 case.” A call to CPS should have been made but I vowed to focus solely on my son’s healing and not try to sue or change the world. The time would come where I could start writing…

A person trained in speech solely for a school district for does not need to have attained the same degree as a private speech therapist. There is a huge difference. There are NO ‘Autism Specialists’ who do not also carry private practice degrees in the areas of OT, SP, PT, SLP, ABA, etc…therapy. Two, four, six and even 8 more years of college and constant Autism research study is what will save your child.

A qualified speech and language pathologist, SLP, is the one who should be diagnosing your child’s speech issues. It can be speech apraxia, disturbance or delay. It can include a voice disorder. Like anything, without a correct diagnosis you will not be applying correct therapy.

Would you allow your general practitioner to perform surgery on you if he did not acquire the additional formal training? Would you allow a foot doctor to perform open heart surgery? I would hope NOT. Then why rely on anything besides a medically researched and proven therapy, performed by PhD professional, board certified ABA.

Beyond a reasonable doubt, the best programs in Washington pale in comparison to the worst programs in New York. Does anyone think I would be foreclosing on a half million dollar horse farm, recovering from a divorce and having given away most of the things I worked for if there was hope in Washington?

My studies, 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.

The law makers are hashing out things which cannot make a difference immediately when it comes to hands on therapy. ABA therapy by a PhD is essential. There is a tremendous shortage of Board certified ABA therapists. Two years ago the study proved that for every one person graduating with this degree there would be nine jobs. That is with 42 states not actively looking for one!

So if your state does pass laws handing down cash or requirements, where will you find these trained persons? Having a degree in any of the areas of needed therapy without also having specific, ONGOING training will amount to disaster.

A ‘speech therapist’ with no Autism training might attempt to grab your child’s hands to begin teaching sign language. If your child has tactile issues, like most Autistic kids do, this will be painful and your child will be traumatized.

This happened to me and my son head banged against the back of his stroller until he smashed into a metal file cabinet.

The experience of being side armed into his chair by the local ‘Autism therapist’, (again, there is no such thing without the other required degrees), left my son afraid to sit in a chair for over a year.

Don’t believe people just because they are in an administrative or authoritative position. They are not all deceitful and malicious, but the majorities lack the knowledge and training. There is no excuse for that since the research has been completed and proven. You are responsible for your child years after these people will no longer be around and you will miss the Early Intervention windows!

If your child needed to go to St. Judes wouldn’t you go? Why are you looking at Autism as any less debilitating? Why are you relying on the words and promises of persons who have not one single success story? What makes you think they don’t make mistakes?

The Governor of Washington, Christine Gregoire, stated that “no child shall have to move to obtain suitable resources.” She absolutely lied.  A total of 678 phone calls in three counties proved her wrong.  The only therapist with Autism knowledge who would accept Medicaid, (and was truly aware and wonderful), was the only therapist I could find for my son in three counties, Thurston, Mason and Lewis, and even at that she could only see my son once a week for 45 minutes.

Further calls and diligence kept retuning answers like, have you considered moving to Seattle? I was living in the same county as the Capital already.

The states are playing legislative catch up but you don’t have the time. If they do approve monies, there are not therapists enough to handle what’s happening to provide the accommodating services your child needs.

Fourteen months after diagnosis, while already having begun his third year of life, I took my young wall staring, head banging, frustrated, growling, speechless child out of Washington and brought him to New York. I advocated 5 days a week of every needed and recommended therapy. Within 2 months my son was speaking conversationally with over 5,000 words with meanings, (though very speech impaired). He was suddenly making full eye contact, singing, dancing, playing board games, trying new foods, having minimal melt downs and HAPPY.

This was not coincidence nor was it accidental. This story has been replicated over and over for years. The ‘cure’ for AUTISM, for Autism meaning functionality not independence, is Early Intervention, home therapy and current, correct Autism awareness. You MUST get into a Board Certified ABA program.

The seriousness of the shortage of these professionals leads me to suggest, at least for a band aid remedy…Webinars provided ONLY to those with approved, qualifying 4 and 6 year appropriate degrees held by someone like Dr. Leah Phaneuf. She is the ABA PhD who is already running a highly successful model AUTISM program, SPICE at Elmcrest, Syracuse, NY. http://www.elmcrest.org/commservices/spice.php

In order to make a comparison to know WHAT to ask for in a school based program in your prospective district, please use as an example the SPICE program at Elmcrest in Syracuse, NY. The results are remarkable and Dr. Phaneuf’s work is unparalleled.

For county/state agencies, (which also include a pre-K ABA program), please research Enable, also located in Syracuse, NY.  I used both of these model programs in Family Court to justify my and the kids relocation to New York during my self-represented divorce in the State of Washington. The appellate decision stating that ‘when one state is far superior to another for the child or custodial parent, educationally, therapeutically, economically, etc…then the rights of visitation for the non-custodial parent will not outweigh the best interests of the child…’ was given to me by a brilliant advocate at advocatesforautism@yahoo.com.

You might feel shocked or even nauseous when you realize the vast differences. I was/am.

Now try and go about your life knowing that you are not doing everything you can for your child. When your child is 13 and you have insulated and cleared out your garage so your autistic child can ‘rant’, ‘scream’, melt down, etc…before she gets her daily dose of ‘calm down’ medicines, you will have regrets. You didn’t do the right things.

Stop blaming the drug companies, schools, city, county and state governments they are all playing catch up and it will take years. Even at that, the numbers of newly diagnosed Autistic persons are so overwhelming that the stimulus monies will continue to run short and you will get stuck on log jammed waiting lists.

In the meantime, move. Get to resources instead of waiting for the resources to come to you.

Your child doesn’t have a lot of time. You can move and you need to if you are not in one of the 8 states where the resources are available 5 days a week through the school systems. You need to be where an agency like Enable will bring ABA into your home well beyond the end of Early Intervention.

40% of non-verbal autistic children will never speak. My son was almost one of them. It’s not pre-disposed. This horrific percentage is due to the lack of trained persons and no access to accommodating services.

I cannot explain the joy I felt when 2 months of New York style therapy brought out my son’s full speech and at 3 years old.  He is now 4 and thanks to the great State of New York and the SPICE program, I can finally hear him tell me and write to me his likes, dislikes, feeling, fears, etc… Most of all, unprompted, (and numerous times each day), he hugs me, kisses me and says “I love you mommy, I really love you, I love you forever and ever!”

Washington State had doomed my son telling me “he’s a hard one”. In only 9 months, New York State was sending home amazing daily progress reports and happy hand written pictures like this.

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