Autism Awareness: Cookies and ribbons aren't cutting it.
April is autism awareness month, and while it's wonderful that the blue and the puzzle piece ribbons and the cookies raise money for Autism Speaks, those of us who spend 12 months a year in Autismland need more than these things. While we appreciate everyone's awareness, the cookies and ribbons aren't cutting it.
Everyone seems to be aware that autism is out there, but no one seems to be aware of what to do about it. Would you know what to do if a person with autism is alone and seems to be non-verbal and lost? Do you know the difference between an angry outburst and a tantrum? Do you know what to do for the person when the tantrum is happening? Have you ever heard of sensory issues and how they can impact a person?
Autism can manifest in many ways: tantrums , poor impulse control, impaired speech or inability to speak, inability to process what's being said, inability to plan or understand consequences of actions, aggression, sensory issues, inability to toilet train, elopement, and the list goes on. Elopement means that the person may dash off in crowds, from the school classroom, from the home, or maybe they will open a car door in moving traffic. A person with sensory issues may not feel cold outside in the winter (and run off without wearing shoes in snow). They may love the feeling of deep pressure and head-butt you, thinking that it feels good to you too. They may bang their own heads on hard surfaces and maybe even bust out windows. Lukewarm water may feel scalding to them, and the feeling of clothes on their skin may be unbearable.
As you can see, autism is a developmental disorder that can impact every aspect of the person's life, and the institution that could help these kids the most is the educational system. Sadly, this seems to be the place of least preparedness and awareness. Currently, some "autism classrooms" in Kanawha county have exterior doors that these students, who have the tendency to elope, only have to push open, and sometimes they lead straight to busy streets and railroad tracks. School systems don't have enough capable aides and don't know how to manage tantrums and often put these students on homebound, even though research shows that children with autism need more intensive instruction and benefit best from one-to-one teaching. They need to be around others more so that they can learn social skills, not sent home with an hour of instruction four days a week. They have a right to a free and appropriate education, and homebound is inappropriate.
Enough about what's lacking, let's look at what could be. School systems could increase the pay for autism mentor aides and hire more people. This could be funded through Medicaid, which school systems often bill anyway. If every autistic child had his own aide, each aide could work one-on-one teaching each child with oversight by the child's classroom teacher and in partnership with a board certified behavioral analyst. Aides in the same school could rotate working with the children so that the child would adjust easier if his own aide is out for the day.
Locally, we have the
Training Center Huntington, the in Applied
Charleston, and Bright Futures in Huntington
to name a few that the schools could partner with to get their staffs
appropriately trained and to get academic programming in place that moves the
child forward. Progress should be evaluated every few months, and if the child
isn't making progress, academic programming need to be changed. No child should be put on
homebound due to lack of trained staff or lack of an aide.
Changes in school environment could also go along way toward integrating these children. Every school should have a sensory room with ball pits, trampolines, crash pads (huge beanbags filled with foam that kids can safely jump into), weighted blankets, and a sensory swing. Additionally, there should be a quiet room with padded floors and walls, blankets, crash pads and other soft items where meltdowns can happen without injury. Staff could observe the child through a window in the door to make sure they are safe, and this would keep staff out of the line of the tantrum. The risk of elopement could be curtailed by not allowing autism rooms to have exterior doorways. It is a huge safety risk if a child can push a bar, leave the building, and get on a busy street or railroad track. Finally, these children shouldn't be suspended for school for tantrums or elopement or any other manifestation of this disability. We can't continue to tuck these children away on homebound and pretend these issues don't exist.
Yes, the changes I'm suggesting would be costly to school systems, but what is going to be more costly is a generation of children who haven't been educated, who are being socially isolated, and who aren't learning the functional skills they need. One in 68 children has autism now. It's time we truly learn how to care for them and meet their needs.