Time for autism awareness to grow up
Raquel Regalado is a Miami resident, former Miami-Dade County school board member, and the parent of an autistic teenager.
She is a guest columnist for FloridaToday and wrote the following piece about how she believes the autism community needs to shift its focus: we need to shift our focus to educating our community from diagnosis to the challenges faced by autistic tweens, teens, adults and the elderly.
This April 2, once again we will light it up blue and spend several days discussing autism awareness. But for those of us who have children in the spectrum, every day is autism awareness day.
For years we have used this time of year to focus on early signs, early intervention and inclusion. This emphasis has created the misconception that autism impacts small children and so a common question that many of us are asked is if our children are “still” autistic.
For this reason I believe that we need to shift our focus to educating our community from diagnosis to the challenges faced by autistic tweens, teens, adults and the elderly. Unlike as with other disabilities, adults in the spectrum are living long lives and will outlive their parents. That is why post-diagnosis, the biggest challenge that we face as parents is caring for and protecting our children while also preparing them to live in a world without us.
As the parent of an autistic teen I can attest to the old axiom, “little kids, little problems, big kids, big problems.” And while we appreciate the social and developmental gains our children have made, the older they get the harder it becomes to find services, programing and opportunities for them because funding and public opinion is fixated on early signs and intervention.
High school options are limited, transportation options are challenging, vocational training is scarce and independent living/housing options are practically non-existent. At 22 our children must leave the public school system and the only program available for thousands of children in the spectrum who are not high-functioning is a few spots at Florida International University Panther Life and Panther Plus, an amazing program that should be implemented in all of our state colleges and universities.
So what happens to autistic adults at 22? Many of them are forced to stay home with caregivers and eventually end up in assisted living facilities were they are bound and chastised for being violent and difficult. Others who have adequate care givers are limited in terms of the scope of their activities and often find themselves in difficult, if not deadly, confrontations with law enforcement.
Which is why this April we must support HB 39/SB 154: Autism Awareness Training for Law Enforcement. The bill requires the Florida Department of Law Enforcement (FDLE) to develop a CET course that will include but not be limited to, instruction on the recognition of the symptoms and idiosyncrasies of an individual with autism spectrum disorder and law enforcement’s appropriate responses to such individuals in varying situations.
Autism training for law enforcement is a necessary first step in the evolution of autism awareness. This April, I ask you to look beyond the statistics and the questions about the growth in our autism population and consider that autism isn’t just about toddlers and elementary school children. Autism is a lifelong neurological disability whose long-term needs are being ignored. The time has come for us to speak for our autistic adults and demand awareness, resources and opportunities for them. The time has come for autism awareness to grow up.