6 Things That Could Be Done Now to Help Autism Families

With 1 in 50 kids are diagnosed with autism, it is time for action.

Posted Apr 01, 2013

Last week, it was reported by the CDC that 1 in 50 kids are now diagnosed with autism.  Following the release of the new numbers, a flurry of articles, ranging from full blown panic to celebration of autism, emerged on the internet.  And while there is part of me that could be tempted to enter the debate, I’m left wondering at the end of the day what good would really come from it when there are others who are better suited to argue why it is happening.  The reason I do think there is merit to asking why the rate is so high and identifying potential causes is because from my perspective, there are already very limited funds for services with more cuts happening every day, and families need help.  The fact of the matter is that, regardless of the increase in numbers, many parents are scrambling on a daily basis to figure out how to best help our kids - whether they are school age or adults so that they can be happy, healthy and independent. 

In reaction to the study, a high ranking congressman responded by calling for school choice, touting it as an important way to help autistic children.  And while I won’t deny that to an extent, school choice could assist some children find the correct placement, school choice doesn’t even make my top 5 list.  Don’t get me wrong.  I get why people want choice, and there are times when I want it too and with good reason.  A plethora of issues lurk within public education from ridiculously large class sizes to too much focus on high stakes testing to bullying.  But the public school system is currently the one place that is required to provide our children with a free and public education (FAPE), whereas many private schools won’t even take kids with disabilities.  And sadly, we can’t seem to fix the public school system (including charter schools), which is where legislators do have flexibility to legislate changes.  We can't ignore what is happening.  Parents need help.  Our children need help.  Many autistic adults need help.  But what can schools and legislators do right now to start helping?

1.  Stop Cutting Special Education, Early Intervention and Medical Assistance

For many parents, access to critical, lifesaving medical and educational services is often the number one parent stressor.  From the day of the diagnosis, we begin to fight to get medical services covered.  We negotiate and legally battle already financially burdened school districts in an effort to access FAPE.  In the meantime, federal and state governments are making cuts to regular and special education, early intervention and medical assistance (MA) with little regard to the increase in children needing these services. 

Yet, it is these services that are essential to many autistic children in terms of quality of life, potential for higher education and ultimately, the outcome of their future.  If we care about their lives, then we fund education and fund medical assistance - because many autistic children and adults rely on MA for healthcare services.  If we as a society do not care about these kids, stop telling me that school choice is the answer.  Because as I said, many private schools won’t even allow kids with disabilities in their schools unless they are specifically serving children with disabilities.  Now if by "choice" legislators mean that they are going to give parents of special needs children and extra forty thousand a year or more to go to a special school of their choice, then by all means, focus on school choice.  Otherwise, how about fixing and funding special education programs in the public schools that we already have and stop cutting funding? 

2.  Cameras In Classrooms. Autism Teaching Competencies and Senate Bill 2020 – The Keeping All Children Safe Act

Part of the reason many parents of autistic children homeschool and want school choice is because it is not uncommon for public schools to miserably fail our children.  Despite the mess of No Child Left Behind, our children do get left behind educationally and sometimes literally and on purpose.  There isn’t a week that goes by where I don’t read another story about a disabled child who is abused in schools via restraint, seclusion and/or aversives.  And when I say aversives, I’ve read stories about kids coming home in duct tape, teachers using sandpaper as a punishment and all kinds of other terrible accounts of abuse

What I find particularly atrocious is that the House and Senate have had the opportunity to pass Senate Bill 2020, The Keeping All Children Safe Act and haven't made it a priority.  Because some legislators pander to their bases, refusing to endorse it on the basis of believing that this is a states’ rights issue, the bill never seems to go anywhere.  Couple that with this insidious notion within the institution of education itself that it is somewhat acceptable to seclude children in scream rooms, retrain them, beat them, punish them, arrest them, etc., it adds to the already difficult task of getting it passed.

In response, many parents all across the nation are advocating Cameras in Classrooms, which at this point seems the only way to remotely protect our children; some of whom are nonverbal or have difficulty communicating.  And putting Cameras in Classrooms is something every state could start requiring and/or districts could do on their own.  Some schools have already installed cameras as a way to prevent violence within their schools.  This measure would make a huge difference by curbing abuse of our kids.  Is it a panacea, ending all abuse?  No, of course not.  Are there privacy concerns?  Perhaps.  But it could go a long way in helping protect our children.

Teacher autism competencies are another essential component that could be used to address educational issues for autistic children.  Yet few states have or use them.  Far too many educators and administrators are sorely uneducated about autism, communication, behavior and positive behavior support.  And when that happens, our kids are more likely to be abused and/or not receive FAPE.  With so many kids being diagnosed, schools should be looking at implementing autism teaching competencies.  However, I don’t see this happening any time soon, at least in my state.

3.  Autism Insurance Mandates

Many states are finally passing insurance mandates, but still we have a long way to go before each state has its own law.  And unfortunately, there is no national minimal standard for insurance coverage for autism, so each state is left to fight on its own.  As it stands today, many insurance companies flat out refuse to pay for autism related services such as speech therapy, occupational therapy, behavioral therapy, etc.  If there are no insurance mandates, insurance companies will continue to discriminate against autistic patients and refuse to reimburse lifesaving, quality of life improving services.  When insurance companies are not mandated, children with disabilities often end up on Medical Assistance, which puts a further drain on federal and state resources.  

While more and more states are implementing insurance mandates, states like Pennsylvania still have giant loopholes in their laws, allowing insurers who are out-of-state or self-insured, to remain exempt.  So parents, who pay considerable amounts of money every month for private insurance premiums, still have no insurance coverage for autism related services.  If we want to talk about how autism affects families, this is a big issue and it is something legislators could fix now.

4.  Employment, Medical, University and Housing Supports for Adults

With all the focus on kids, we really, really need to pay attention to what is happening to autistic adults.  We only spend a small portion of our lives as children, and the majority of our lives as adults.  If we are going to make it a priority to assist autistic adults, then we need to start looking at creating and maintaining adult services which include employment services and housing support.  Frankly, in Pennsylvania, the options and supports for adults are pretty slim.  But just imagine how positively both the lives of autistics and the health of the state budget would be if we invested in helping our adults obtain and keep meaningful employment, which might also provide them with health benefits. Do we want to help give disabled individuals a hand up via employment services and inclusionary housing options, or are we content as a society to do nothing while we complain about how many people are on welfare?

Another area that falls into this realm is getting colleges ramped up to help our kids be successful while in college.  Since IEPs do not follow kids into university, we need to look at how to best help our kids maintain critical accommodations and related services during higher education.  Colleges need to get on board with the fact that more and more autistic students are going to attend their programs.  Disability services offices need to be well versed in autism and prepared to help our kids finish college.

5.  Anti-Bullying Initiatives & Acceptance

Bullying is a serious problem, which disproportionately affects autistic kids.  Schools could be doing so much more to help prevent bullying, by peers and teachers (sadly this happens).  Instead of ignoring it, wishing it away, they need to take it seriously.  And, no, a sign in the hallway isn’t enough.  Teachers and administrators need to be engaged and held responsible when they ignore it. Bullying should be reported and handled in a manner that does not blame the victim, which unbelievably, frequently happens.   

To address the root cause, schools and communities need to create a culture that supports diversity, including neurodiversity.  Acceptance of neurodiversity starts when our kids are little.  It is about neighbors knowing a child has autism but still actively inviting the autistic child on play dates.  It’s about schools thoughtfully promoting inclusion so our kids’ strengths shine in class instead of always focusing on their weaknesses.  It’s about purposefully making sure an autistic child is included at recess and helping him join a group of his peers on the playground instead of ignoring him.

 Acceptance is about schools encouraging lunch buddies where our kids can have lunch in quiet environments with peers instead of subjecting them to a chaotic, noisy cafeteria where they get sent into sensory overload.  And when our kids do stim, it is about understanding their need for stimming and sensory as opposed to punishing them for flapping their hands or making noises, etc. It is about schools embracing programs like Best Buddies and encouraging and assisting our kids to join clubs and sports teams so they can make friends based upon shared interests. 

When you do these kinds of things, our kids are more likely to feel accepted and learn how to interact in an overwhelmingly neurotypical world.  And as a result, we may raise neurotypical kids who are caring and accepting as well; who when they grow up will be more tolerant and accepting in the workplace.  I have seen these positive things happen in schools, especially with Best Buddies.  It can and does work.  But it takes schools that are willing to put in the time and effort, as opposed to doing nothing, which is often the case.

6.  Stop Spending Money on Mother/Father Blaming Studies With No True Explanations/Results

I wasn’t going to list a sixth item, but one has to stop and ask where all the money to help autistics is going.  A good portion of it is going toward all kinds of cause “studies”, some good and some not so much.  Even studies that don’t push the blame approach are often so controversial in their methods or are done by people who have a conflict of interest, it ends up that no one will believe them anyway. 

But my specific pet peeve is the blaming study.  What do I mean by “blaming” studies?  Here is just the latest I’ve heard reported in the news: Mothers abused as kids are the cause of autism?  No wait, older fathers are the cause.  Or was it older grandfathers?  Maybe it was fat mothers cause autism?  That’s right…My son was born to “none of the above”, but it must be my fault anyway.  No worries, if I wait long enough; there will be someone who does a study to tell me it was my fault.  The bottom line is that I don’t know who is funding these studies, but it isn’t helping greatly, in my opinion.  

Do me a favor, researchers; I beseech you.  Before you do one more study and spend one more red cent, consider how your study is really going to help society, autistic children and/or adults and their families.  If it isn’t going to help or if it is going to merely cast blame again, do us all a favor and spend the money on something worthwhile, like researching employment opportunities for adults or improving quality of life.  Or spend the money on helping families, individuals and/or school districts buy i-pads and other types of communicative devices for autistic children and adults.  Do a study on how to best include our children so they are accepted.  Frankly, there are hundreds of ways to spend a dollar on worthwhile things and studies that would actually help our families and individuals on the spectrum.

Moving Toward Action

I know full well that this is a simplified version of what to do to help autism families.  And without a doubt, there is so much more we should be doing in addition.  But there is also something to be said for simplicity.  Schools and legislators should at the very least be looking at cherry picking the easier items, like implementing Best Buddies programs and working toward neurodiversity acceptance in schools, for example.  But they also need to start tackling the more difficult items and making them a national priority, because families and autistic adults are in the trenches now looking for solutions to everyday issues.  

Parents raising kids with disabilities know how difficult the fight is.   We spend hours writing letters to legislators to keep them from cutting critical medical and behavioral health services to children, some of whom are adult children.  Month after month, year after year, we fight endlessly for appropriate school services.  Parents end up homeschooling, cyber schooling often in an attempt to provide our kids with the appropriate and safe education they may never get in public schools.  We worry that our kids will be abused in schools and other community settings, because week after week it continues.  And society turns a blind eye, silently approving of it; treating our autistic children as "less than".  As our kids become adults, the journey continues; many autistic adults are left with no services, remain long waiting lists for autism waivers/housing and subjected to discrimination in employment settings and within the healthcare system.  

In the end, there is one thing about these numbers that I think many people could agree upon; we need to get our priorities straight in this country.  Because cause known or not, these numbers are real, and there are going to be more and more adults and children in need of services.  If legislators want to know how to help in reaction to these numbers, they should go talk to an autistic person or a family who has an autistic child.  We’ll tell you.  

About the Author

Kymberly Grosso

Kymberly Grosso is an author and mother to a 16-year-old son with Asperger's and a 6-year-old daughter.

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