When you first get the diagnosis on your toddler, this tiny being, this round, soft, angelic, helpless thing of a human who is beholden to you for its safe-keeping and survival, your guts fall on the floor. If you are a first time autism parent, you don't even know what they are telling you. The feeling is akin to your beloved child's life being over, and truth be told, it is over in a manner of speaking. All special-needs parents have been told the tale of the "Trip to Holland." Well, this is a detour of shattering proportions: the wild ride of autism.
If you are fortunate enough to be standing in a Regional Center prior to your child's 3rd birthday (Regional Center is the clearing house in the state of California for the identification of autism) when you hear this diagnosis, you've gotten a slight jump start on the monumentally huge amount of therapy your child is going to need to face autism head on. The earlier and more intensive the intervention in autism, the better the chance of making any kind of progress for lifetime success for autistic individuals. Experts across the board concede on this urgent fact.
Here is where I advise the new parent in autism to give everything it takes to secure your child's therapy prior to entering your school district's jurisdiction. This is the single most important piece of advice I can offer to working class parents who have no way of paying for the more than $150,000 a year worth of services needed for an appropriate early intervention program for toddlers, when they are first diagnosed.
For our family, the age was two years and seven months when we were first referred to Regional Center for Lila's condition. It took a month of unreturned phone calls to get an appointment with a psychologist there for diagnosis. The early intake supervisor at our local Regional Center casually dismissed Lila as being of school age in just a few short months, and advised me to wait until January -- her birth month -- for intake into the school district.
One's local school district is the second stop for therapeutic services in California for autistic children. This, as well-known special education attorney Valerie Vanaman would tell any number of parents who come to her for help in getting their autistic children therapeutic services, is the time to expect an endless array of obstacles to anything resembling an educational program for an autistic child. Once, when I was faced with my first hearing with Regional Center for denying Lila speech therapy, Valerie looked at me soberly and told me to save my tears for when Lila transitioned into the school district. Then, she advised, I would learn the meaning of the special hell I was about to encounter.
Something inside me told me to fight to get Lila's services started at the Regional Center level, despite the supervisor's cajoling to wait a few short months until the district took over. He was tan and casual and jolly about the whole idea, and I was nearly enticed into putting things off for a time when I might be slightly less devastated with the news of Lila's disorder. The same cautionary voice that had told me not to vaccinate Lila after I had done copious research on that topic prior to her birth was speaking to me now. In beginning the struggle for services early, I had no idea I was taking the most important step in guaranteeing Lila would get a suitable concentration of therapy at the school district level. Setting precedent meant that the district would not have cart blanche to offer a skeleton's share of therapy to Lila and have enough traction to get away with it.
This brings us to the federal legislation that governs the administration of education, therapeutic and clinical supports that individuals with disabilities need to complete their school-age years. The IDEA: Individuals with Disabilities Education Act: first drafted into being in 1990 from a prior act that had to do with "handicapped" children, then amended again in 2004 with grave results for many thousands of children. IDEA tells us that our children are guaranteed the right to a FREE, APPROPRIATE PUBLIC EDUCATION, or as fondly coined in our community: FAPE.
In order for states to receive badly needed Federal funding for special education, they must comply with IDEA. But compliance, quickly learned by any autism parents taking on their local school district for appropriate services for their autistic child, is a slippery slope. The word that contributes wholly to the ability of states to flub their compliance however they see fit is: APPROPRIATE. School districts and parents spend millions of dollars each year fighting in hearings, and then in appeal on the 9th circuit level in California, over what APPROPRIATE is for their autistic youngsters.
For example: at our Regional Center, after two hearings in two months when Lila was first diagnosed, I was able to procure for her what the "standard", according to autism experts, is for autistic toddlers first entering early intervention at pre-school age. 40 hours a week of behavior-based therapy in the home, 2 hours of clinic based (for some children this should be more) occupational therapy with a sensory integration focus, and 3 hours a week of clinic-based speech therapy. Lila had just begun these services, and was in a previously selected private pre-school, when she transitioned into school district jurisdiction.
The school district held its own evaluations of Lila over a month's time three months after Lila's 3rd birthday. The evaluations themselves were horrific for both of us. I watched, as Lila was forced, in sheer terror that caused her to vomit, to descend the heights of a playground slide and to swing, two things that brought her untold horror due to her sensory dysfunction. She was fed Cheerios as an incentive to perform tasks she could not do, though the district's therapists had been advised by our family doctor, Lila is allergic to wheat gluten. Again, Lila was made physically sick.
Then, it was time for Lila's first IEP meeting, the time when all the professionals involved in Lila's therapy and education are to gather and decide the best course to offer Lila for her education and related therapies. IEP stands for Individual Education Plan, yet many find it is nothing like individualized in the end.
Lila was offered a placement in a "Special Day Class" on the public school campus in our city's neighborhood. In addition, she was offered a total of 100 minutes per week of "pull-out" services, where they suggested a district employee would come and take her out of class for 20 minutes of speech assistance 3x a week, 20 minutes of occupational therapy assistance 2x a week, et cetera. It sounded deeply inadequate to me at first blush, but Valerie told me I had to go look at the placement before I could respond to the offer.
The next day, I met another cheery-faced program supervisor from the district at our local school following the offer of FAPE at the IEP. She took me on a circuitous route through the school grounds to the far end of the outskirts of the property, where there was a clatch of decidedly shabby trailers stationed.
Upon entering the trailer for the autistic, retarded, and otherwise disabled children, my stomach took a nauseous turn and I had to fight every instinct to address the district supervisor with a "what in the name of. . ." question that could have been inappropriate to deliver in what we will loosely call a "classroom." Dim neon lights exposed a cramped room with darkly tinted windows where non-verbal children, aged from 3-7, ran around in diapers, howling, screaming, beating their bodies against the nearest available wall while a teacher whose second language was English, barked commands at them that went unheeded in total. I noticed an aide in the adjoining bathroom fighting with an unruly 5-6 year old on the changing table, to put on a clean diaper.
We went to due process. The district is in a position, under the current ways and means, to litigate first, and discuss later. My hair fell out. I stopped sleeping. My friends became a distant memory as every waking minute we were not in therapy I spent doing research, finding experts to evaluate Lila on private dollars I didn't have, and preparing for the battle royale in special education: private intensive services for a child whose unique diagnosis actually meant that her disability, unlike so many others such as Down's or straight mental retardation, was highly treatable with a chance of profound positive results.
This is where we parents stop, and ask ourselves, how is it that the disability of autism is lumped in with every other disorder a child can possibly have, when it comes to educational and therapeutic legislation? Clearly, autism is its own universe, and its inhabitants have a complex, treatable array of problems that differ vastly from disabilities of every other ilk.
The IDEA, the governing statutes that judges currently use to determine "appropriateness" in any one of the thousands of lawsuits currently pending in courts across this land, states that school districts have no obligation to provide autistic children with maximum support to achieve not only their best educational result, but their therapeutic ideal -- which in the end translates into children with autism who grow up to be adults with autism, who can actually go to college and work to support themselves as adults. Under IDEA, the district must only provide a "Basic Floor" of opportunity.
The meaning of "Basic Floor" for our autistic children, is lifelong institutionalization, a prospect that costs taxpayers in America millions and millions more dollars on the backend then properly treating our autistic children on the front end. The civil right of these specialized children is Maximum Platform, a high jumping off place packed to the hilt with every intensive therapy these children need, including bio-medical intervention. This is a place where litigation ceases, where families, in their despair and confusion, can go to get the right and speedy treatment their autistic children urgently need.
Autism is a disability universe all its own. With maximum intervention, bio-medical treatment, and continuous uninterrupted therapy through the years of 2-10, these children can recover, many become fully functioning, and some improve to the point of inclusion, which means they are part of their social environment with minimal support from an aide.
The current paradigm of legal struggle and blockades put in place by a faulty IDEA, a school district whose hands are tied by budgets that continuously fall and fail, and a judicial system clogged with thousands of cases of desperate parents fighting for the lives of their children, will not work with the oncoming tidal wave we have in the autism epidemic. In 1980 there were 1 in 10,000 children born with autism in the United States. In 2009 there will be 40,000 children born with the disorder, translating into 1 in 150. The number of autistic births rises every year, it never plateaus. Just this week the Department of Developmental Services released a report on the rising numbers that is shocking, indeed terrifying in its illustration of this epidemic no government arm is willing to properly acknowledge (see p. 8 and 9)
Indeed, as a grandfather featured in our film was heard to say, if there were 1 in 150 children being abducted in California, we would call out a state militia, we would declare this a disaster area. And this is what we have with autism, an emergency of epic proportions.
Leaving the funding needed to give the children of this epidemic their civil right to thrive as members of society, up to a school district whose own typical populations have poor resources to begin with, is a travesty. Autism is an epidemic and an emergency. It deserves at least the same funding consideration as other natural disasters demand, and I would argue, a much stronger consideration for funding from Federal resources then the wars we have bankrolled over the past ten years.
In this, autism is a universe of its own, and in its own right demands unique and stand alone legislation which offers inviolable access to the intensive intervention and medical treatment these children need to reach for recovery, vast improvement, or inclusion. This is a civil right not currently afforded these children and the families who lose everything in the struggle to pull them back from the edge of neurological oblivion.
At the age of two, my daughter lost most of her words, would sit slack in a chair unable to hold her body up, would flap and flail and spin in circles and ignore everyone around her. Looking into your eyes for Lila, meant torture. Her meltdowns were of monumental proportions and would last for up to an hour and a half. The world would tilt on her axis and stop spinning during episodes that were entirely inconsolable for no other reason than the sound of the vacuum had hurt her ears.
At the age of seven, after the most intensive and thorough possible therapeutic and bio-medical intervention, Lila converses just below appropriate age level with an auditory processing block, she can be talked through emotional meltdowns and lead through her day in a neuro-typical elementary school with the help of an aide. Her academics are in the average percentile with the rest of her class due to untold thousands of hours of therapy over a five year period of time. Her physical flailing continues due to a blockade of her occupational therapy services by a school district who now randomly decides what it shall give and what it shall take away.
Our last IEP was 16 hours long over two days. After debating over a speech goal for over two hours, there came a moment when one of the squadron of speech therapists the district had hired to diminish Lila's speech program stood up in exasperation and announced "How can I tell you what to do with a child I know nothing about?"
And herein lies the center of the matter with how we currently mete out scraps for these dear, capable children. We autism parents and our doctors know our children. We know our children can struggle for recovery and get there in varying levels of ability. But we know they can earn recovery if they just get a chance.
Maximum Platform is the very least we can offer these children, who are not throw-aways, and who are worth every penny of the money. Give them their own Act, give them open access to these crucial interventions and medical care, and see how they grow.
The Pilgrims: The Journey to a New World for Autism,Narrated by Aidan Quinn is a new feature documentary film made about the civil rights crisis in autism worldwide. http://www.pilgrimsmovie.com