There is a general assumption that when a child is diagnosed with an Autism Spectrum Disorder (ASD), the public school system will be an immediate ally and asset for your family. There are laws in place that require the school to address the diagnosis and assess for needs. Individual Education Programs (IEP) are required for students who are receiving any services under special education. For students who do not qualify for special education services, a 504 Plan may be written to arrange for accommodations and modifications to assist in a smoother classroom experience.
Many parents are under the impression that once their child has been privately diagnosed or even qualified under the ASD umbrella by the school's diagnostic process, he or she will be eligible for services and begin receiving those services quickly and efficiently. For some parents, however, the process is made even more frustrating and painful when there is a determination that services are not required. Autism, yes. IEP, no.
This was my experience over the course of many years during my son's elementary school days, in two different school systems, in two different states. There was never a question about the diagnosis. Initially diagnosed with Asperger's Syndrome, the diagnosis later changed to Autism under the new criteria. All agreed my son fit the criteria for diagnosis. All agreed he had some challenges and could benefit from minor accommodations and modifications. All agreed that, because he had no academic issues and few 'unmanageable' problems, an IEP was unnecessary. He would not receive any support and would not receive any services. At one point, I was literally told he 'did not cause enough problems in the classroom' to warrant support. Because he was a child who held everything in until the end of the day and exploded with rage and frustration when he got home, he was ineligible for services through the school system.
My husband and I were able to find support privately, although it was very expensive. We paid for social skills groups and for social skills and behavioral therapy. We visited a developmental-behavioral pediatrician and a psychiatrist. He learned new coping mechanisms and received a lot of help with deficits in motor skills and communication and social skills, through multiple therapies and involvement in martial arts. We continually met with representatives from the school system who appeased us with promises to 'check in with him' every now and then and agreed to be 'available anytime he comes to us for help'... right... because lots of young kids on the spectrum realize when they are becoming overwhelmed and immediately seek out the help, and are then capable of articulating their specific frustrations and needs.
At school, he faced bullying and felt isolated. We were eventually able to convince the school system to provide him with social skills services through an IEP. We hoped increasing his social awareness would help him make friends and be more equipped to handle his frustration. Instead, we found it meant 30 minutes a week of outside play with a couple of other kids in the school who had social skills issues. The 'help' was an already overloaded counselor, unprepared and untrained for work with children with ASD. These years were frustrating, maddening, and unproductive. He continued to stifle all feelings at school, shut down to feel safe and make it through the day, and then completely melt down as soon as school ended.
I wish I could say the situation improved. We eventually pulled him from traditional public school and experimented with alternative types of education that better served his academic, social, and developmental needs. Sometimes I feel like we gave up a fight we should have fought harder to win. Sometimes I think we waited too long before realizing he was falling through the cracks and we needed to take drastic action to help him succeed in school before more damage was done.
I learned some important lessons about advocacy and seeking support outside of the school system. I know many people who have never had to utilize resources outside of the schools and I know some, like us, who only found help in the private sector. Every family's journey with autism is different, and accessing resources can be a challenge. If your family is struggling, and you do not feel the schools are providing sufficient support for your child and your family, contact your local or state autism organizations for guidance.