Autism The Bad Guys vs The Good Guys

The current amount of misinformation about Autism is largely due to Organizations like The Autism Society. They thrive on donations... but give nothing to any child. They print brochures and pay themselves very well to do it. The more terrible the prognosis, the greater the donations so let's make Autism sound like LOCKED FOREVER IN A WORLD OF DARKNESSSSSSSS ARKNESSSSS ARKNESSSSS......and then put a DONATE button on Facebook and Amazon and Ebay and Voila! Everybody feels all warm and fuzzy...and not one kid can get a dime. That is how bad this out of control Autism machine has been and still is. A billion dollar milking machine where almost no one is accountable!

You see, like AIDS in the beginning when it too was badly misunderstood, painting a false "gloom and doom" narrative serves their purpose no matter how much damage it does to the kids, parents or society. It has lined their administrative pockets, as well as the pockets of many book writers, speakers, fake diet makers, stores built on fake diets, T-shirts designers, etc...all of whom have never helped a single child, person or family with anyone on the Spectrum.  

I must stop here and mention with one BIG exception... AUTISM SPEAKS is NOW the ONE GREAT Organization run entirely BY and FOR persons on the Spectrum. (Thank you Alex Plank). It is always better to donate to Organizations you know within your area. Donate at your local churches, Veterans Club’s, Community Organizations where you know the people and can see charity. Do not be fooled by fancy media campaigns or stores built on fads.

Autism needs you because none of it is trickling down. None of it. We can’t even get used Fire tablets at a discount. All those ipad campaigns? Tax write offs. Scam. Scam. Scam. I have asked to see the lists of recipients from nearly ever one of those celebrity campaigns and Fundraisers. (crickets...)

Autism is NOT gloomy. Autism is NOT walking on eggshells. Autism should NOT be something feared. Autism is not fragile. Autism is complex. Autism is never boring!

“Autism is….UNIQUE, aren’t you?” (My son loves that one.)

The TRUTH is...Autism Spectrum Disorders...IF diagnosed EARLY ...before age 3...and Early Intervention is used correctly before the age of 5, significant progress can be made. My once 'severely' Autistic son and I just came back from running around Italy in the circus, in hotels and on transit for 2 months...(PLUS getting stuck at the airport for 6 days), because I DID NOT walk on eggshells and I did NOT tell clowns to take off their make up and I did NOT tell the world to be quiet and I did NOT use apps for Autism...BE REASONABLE PEOPLE!! We are not raising kids to live in bubbles! If you treat them that way...what later? Deal with the melt downs while they are little and you will get through this!

IF you cater and fold to every little whimper you empower that terrible tantrum...then what about adulthood? What happens when you are no longer here? You have doomed your child! You have NOT prepared them for the real world. THAT IS CRUEL. Get over it. You are the ones with Autism issues NOT THEM. They will be OK but you don't know WTF you are doing if you are not preparing them for the real world. STOP treating them like idiots and glass dolls. They are normal, amazing, probably way smarter than you, little people!

And...turn on the wifi. Monitor it or add the kid controls but if they can't get to advanced programs or coding or Wikipedia or Garage Band or Science Apps...or whatever their niche will be...you missed the whole purpose of TECHNOLOGY.

Autism is a treatable MEDICAL DIAGNOSIS. We know how to do it through CORRECT Early Intervention. (Not flying by the seat of your pants winging it.) Just to be clear, flying by the seat of your pants winging it...or any other quack treatment of a medical diagnosis while there is a KNOWN, EVIDENCE AND RESEARCH BASED RECOMMENDED TREATMENT, endorsed by The Attorney General of The United States almost 30 years ago...is negligent, is malpractice, is criminal, is unethical, etc... and we hope soon will be seen no different than a surgeon or any other doctor completely botching any treatment... leading to a lifetime of unnecessary disability that did NOT have to be that way. THERE IS NO DIFFERENCE.

WITH a good TEAM all using a singular Methodology, (to establish consistency and continuity), in the School system, (between the school, home and therapeutic environments),  with CORRECT information which must be PARENT, (home caregiver) INCLUSIVE training, 1 on 1 and begins immediately using a TEAM...NOT little once a week home visits....(See SPICE at ELMCREST in Syracuse, NY as a model program by Dr Leah Phaneuf, Board Certified ABA with a FULL TEAM incorporated)...then all kids on the spectrum over a 2 year program...before the age of 6 will show significant PROGRESS. (The AG noted 40 hours a week of ABA and 25 of Speech, with intensive 1 on 1 which is achieved with parent participation)

I saw the progress. I was there. NO DIETS. NO FADS. Just hard work. I moved 3000 miles and gave away my home and all belongings to get to this program...even his speech came which I was told would not! It is not an accident. Every child in the program...some more severe...boys and girls....ALL IMPROVED & ALL WENT ON TO BE AT LEAST PARTIALLY MAINSTREAMED IN PUBLIC SCHOOLS! (The kids continued having 1 on 1 support all day and Autism related therapies provided by the schools).

The teachers and schools did an amazing job at Social Groups, having “lunch bunches” of kids to eat in small groups so the ASD kids would not be overwhelmed by the sensory overload of the cafeteria, rotating reading groups so all students would become familiar and making sure all barriers came down. My son was just one of the kids and I am so proud of New York State for the amazing job it does!  

When we returned to Washington State I thought they would clamour to find out how my son had come so far so fast. I could not have been more wrong. They did not want me speaking to other parents and wanted us gone. They put my son in danger and consistently violated his IEP. They treated him so badly, they even gave him a 1 on 1 with absolutely no ASD awareness at all. The kids in the state have had no ASD awareness or exposure and what a huge difference it makes. They are fearful and nervous and teachers make no efforts at easing the awkwardness or assisting socialization. The scary 1 on 1 hovered which made it worse.

The cafeteria was overwhelming and the inexperienced scary ladt made the huge mistake of asking my son if he wanted to eat instead of a choice between foods. It had taken us years to get him to eat and in one move...she gave him back the power to stop eating and he took it. The stupid, stupid, stupid, stupid, stupid, stupid, ….omg….they didn’t read the IEP at all. OR they intentionally destroyed us.

The final straw was the school sending my son, a little 2nd grader, to walk a big outside campus, alone, from a front building to a building all the way in the back, without his 1 on 1, in between bells when no one else was outside.

His speech is very apraxic and hard to understand so if he fell and started to bleed he is missing a clotting factor so he would have bled and bled and would not have been able to explain his condition. With his feet needing orthotics, the chances of him falling were quite high.

There were many reasons besides Autism Wandering he needed a 1 on 1 and it looked as though day after day the school was trying to intentionally harm my son. Enough was enough. We had returned 3,000 miles only to find ignorance was now mixed with outright nasty, evil, horrible people. The State guy said he agreed with me BUT the “new” Special Education Directors were not like the people he used to work with. He was a great guy. Almost ready to retire and not wanting to take them all on. I learned a lot. My dad had worked high up in the ranks in the 70s...and so Doug was a memory lane.

Out of sheer curiosity, on my way out,  I asked if any of them, including The Special Education Director knew the #1 cause of death and injury to kids with Autism in the country....and none knew...I was sad. I left them with brochures from the global AWAARE.org which had been around 13 years...shocked that they didn’t know there was a special part just for schools about fencing. Wandering, drowning, death. It’s a built in glitch and most states even pay for fences around houses and apartments where kids with ASDs live called “environmental grants.”

I am in hopes that future kids might not run through the open gates...to The Dairy Queen right across the street...or the woods behind the school. This is 8 years later and the fences are still open.

The template for great is ELMCREST and I know there are more BUT I can only swear to what I have seen and experienced. This is what every school district across America should be doing...and they are already taking the money to do...but are spending it on sports equipment, administrative raises and many other unrelated things. KNOW YOUR I.D.E.A. Laws!

Don’t let anyone tell you your child does or does not have Autism at the school level. They can advise BUT they have overstepped way too many times. They hand out IEPs by saying students are ‘SLOW’ but never send them out for official diagnosis. 5 ‘SLOWS’ is a lot of extra money... How do they know it’s not a bad teacher? EVERY student given an IEP should be sent out to a Child Psychiatrist or Neurologist. Stop this fraud! IF they come back fine then you either have crappy teachers or Special Education Directors being used as Bankers!!

The PROBLEM is...these kids grow up thinking there is something wrong with them and set their sights LOW. I have friends and their kids who BOTH have ‘SLOW’ IEPs!...NO official diagnosis besides that! The mom is actually really intelligent but decided NOT to go to college because of that label! That’s not fair! If teachers want to teach...would those students be the reasons they became teachers? What is really going on and why all the need for raises with this going on too? Why is the special needs system being so badly abused and why is ‘slow’ being allowed on an IEP without further investigation? This scars people for life!

No one but a Child Psychiatrist or Child Neurologist can diagnose OR whether or not a child has Autistic Spectrum Disorders or any other Developmental Disability! No SCHOOL OFFICIAL CAN MAKE THIS DETERMINATION and they MUST DECIDE/err on the side on the best interest of the student! DON'T BE BULLIED by IGNORANCE!

If you allow the 5 year old window to pass, it can take 15 years to teach what could have been taught in just 1 year. 70% of a child’s learning and language foundation is complete by the age of 3. Children with ASD can be taught the same things as neurotypical children! (NT's)...they just learn it differently. One is Windows OS and one is a high powered LINUX OS....BUT you need to install the operating system BEFORE you start entering the data...

By 10, my son was flying through complex coding on multiple platforms...the same kid the President of The Washington State Autism Society called "hopeless" at age 3....(She moved to Arizona when she heard we were coming back. Seriously).

When a man first asked me why was I trying to change a state instead of helping my son I thought he was nuts... until he explained that 8 other states actually had the things I was fighting for. He told me to go help my son THEN come back and fight. He had done it...and now I have done the same thing.

Parents who choose to stay where their kids will get no or insufficient help...will have to explain that to their kids later. Though I love parents who tell me their kids are getting great services here...and I ask them, compared to what? People want to believe they are doing the best for their kids when in fact they are not. The schools are lying, therapists do not move to states without good paying state insurance and plain and simple, there are great states and bad states for Autism. PERIOD. If you have a mountain of school debt to pay back you will not go to a low paying state right out of college...not even if marijuana is legal and Starbucks has it’s home office there. You will go where you are offered the most money.

Go with your child and get the help they need. You would go to St Judes wouldn’t you? Why do you have a right to take this from them? As for houses and cars and material things? We lived in a poor neighborhood and ate from the food banks at the churches. (Good thing I also speak Spanish!)  I gave away everything including our home & lost every bit I had ever worked for....

BUT what good is a house, land, horses or anything…. if your child is suffering, headbanging, sad, can’t hold your hand, won’t look in your eyes, doesn’t want to eat, won’t play and cannot speak?????????

NOTHING, NOTHING, NOTHING. NOTHING. I just wanted to be able to hug him. Just that. IF I COULD JUST LOVE HIM. It was so hard. So hard. I felt so alone. I was scared. I didn’t know exactly what to do but I knew the garbage I was reading was garbage.

I had to move. I needed that program and I was going to do whatever I had to do to get there and I did.  

My son's first sentence was, "I love you Mommy"

His speech was mumbled and nasally but it was the most beautiful thing I ever heard…

My miracle.

Thank you God.

There is no price tag for that.

Autism is for life. So is diabetes. So are many things BUT do not believe you get what you get and you are stuck with it! I am a single mom with 4 kids and 6 grandkids. I am very broken inside because I had to leave my older kids and grandkids because my Governor lied when she said,  “no child shall have to move to obtain suitable resources”

I had to move 3,000 miles away because my state did not have any resources for Autism. No mother or parents or family should have to make these decisions!

What is the answer? A comprehensive K-12 singular Methodology, ABA using a highly qualified, Board Certified Professional, no more winging it with a medical diagnosis like Autism...afterall, you wouldn’t want anyone winging it with your medical diagnosis! Job programs, adult programs, community programs, comfort rooms, Hotels/Restaurants with **SAFE Sensitive Autism Family Environments-Training (I have worked with area restaurants), Caring for caregivers, and so much more. The most important is early screening, early diagnosis and correct Early Intervention. The money is there but it is, in many cases, being wasted, misappropriated and...well...I think someone needs to start looking into this.

Every district needs to create a Dream Team modeled after the program we attended with very early diagnosis.

Dream Teams, (Special Education Teachers, Speech and Language Pathologist, Occupational Therapist, Physical Therapist, All working with a Board Certified ABA WITH Autism Background...and in this case Dr Phanuef was also an associate with The Autism Group at Syracuse University Medical Center which included World Renowned Autism Specialist Child Psychiatrist Dr Louis Pellegrino. These DREAM TEAMS need to be built so children with Autistic Spectrum Disorders, (yes, including Asperger’s),should be able to go to amazing programs like the one. Since Dr. Phaneuf cannot come to all the states maybe she can hold Webinars? I don’t know but the best is the best.

Here is what some schools are doing. Instead of being put in a central program with a highly specialized team...our kids are being spread around schools because of the high monetary tax value each kid brings from the Federal Government because of the Autism/Special Needs Incentives! Yes...they are cash cows. Special needs kids can be worth 2, 3 and depending on their disabilities...many times more tax dollars than their ‘typical” mainstream peers. The money from these kids does not have to be spent ON THE KIDS...and BOOM...that creates a big loophole that the unethical have widened into a land of very ugly opportunities.

No schools should be purposely taking Special Education money and buying sports equipment, band uniforms or giving raises to administration instead of using it for the kids it was delegated for! IF IT WAS actually used for the correct children, the right therapists could be hired. As for the states refusing good Autism Insurance reform, it is that very reform that puts the money into the schools by way of each childs state insurance when pooled together to afford good therapists! The State Insurance Autism reforms and a cleaning up of Department of Education Special Education Directors can make a big difference in the lives and future of Autism in America!

My son went from severe to savant!

While every child may not have the same results, (though every child I saw had significant progress over the 2 years I watched the program), EVERY child of EVERY tax paying AMERICAN CITIZEN deserves the opportunity to achieve his or her personal best.

Remember, schools get EXTRA tax money per student based on that student’s special needs. This creates an incentive NOT to help the kids improve OR the Federal Monies will be reduced! Parents are not aware of how the system works. (Though there are great teachers who still try to do the right thing...there are often those above them who discourage. Autism in The USA is not being treated correctly by the schools).

It's a nasty game and many Special Education Directors hold the purse strings. Crooked districts and administrators who should be turning to their PTAs or School Boards now lazily use a wink and a nod to Special Education Directors to get funding for projects that SHOULD NEVER come from this precious account! SHAME ON ALL OF THEM!

Parents need to know the truth, teachers need a protected venue to speak up because too many are scared of crooked systems & evil superiors. They are asking for raises but also know and see funds being abused!

Parents tragically think their kids are barely or never improving while teachers are frustrated because they aren't getting technology or support!

SO, WHERE HAS ALL THE SPECIAL EDUCATION FUNDING BEEN GOING? If your child has an IEP, you have a right to ask for a complete accounting of every penny that came in the name of your child, ever! If you begin to get a run around and you want to help create change? We better get lawyers. You won’t be able to go back and change the past but we can make the future better for the kids coming behind ours. Sometimes the only thing people understand is a kick in the purse.

If you truly want to know how well your team knows Autism...ask them a few questions...As you learn, so should they and keep the heat turned up! Stay on their heels. You would not allow your doctor to be ignorant so don’t allow the people treating your child to pretend to know what they are doing either.

I’ll get you started....How much more serotonin do children with Autism have? (17%-33%) What is the name of the website/online community FOR persons with ASD (if they don’t know this...what have they been studying?) ‘Wrong Planet’ Name a movie where the director and both stars have ASD (‘Splash’-Spielberg, Tom Hanks, Daryl Hannah) Which original SNL star has ASD? (Dan Aykroyd) OK...how about famous musicians? (Wolfgang Mozart, James Taylor) Inventors? (Henry Ford, Albert Einstein), and the list of geniuses goes on and on, Isaac Newton, Bill Gates, my son.

Or just ask what I always did. I would pretend to need their help and ask Special Education Directors and Administrators...to name their favorite places they get their most current and up to date research/facts about Autism...It just amazed me, (in a really awful way), when they would say....The Autism Society.

Sorry if this ran on and got sideways a few times....I got tired.

My heart is so invested. Love to you all who are so invested too...and God Bless.