Kymberly Grosso

Kymberly Grosso

Autism in Real Life

Moving Beyond Autism Awareness to Action

Awareness is not is time to raise the bar.

Posted Apr 04, 2011

April is Autism Awareness Month. Yet I can't help feeling frustrated as we pass out ribbons and light bulbs.  When my son was first diagnosed in 1999, it felt as though we were in the "dark ages" so to speak and not many of my friends or family members had ever heard of autism.  Autism awareness was very much needed.  Today, however, it is hard to find a person who is not "aware" of autism. Things change. While I don't think we should abandon autism awareness, I do think our community needs something else...something more. Meaningful understanding of autism is needed as well as the drive to address immediate issues that currently affect thousands of children and adults with autism.


The fact remains that for most children with autism, services are limited at best. Worse, children with autism who are nearing 21 are facing nonexistent services. Adults with autism who are able to work still struggle for understanding in the workplace. And while many of our children do succeed via splinter skills and talents, there is little attention in the news to the thousands of children who are severely affected, who cannot speak for themselves.

The fact is that there are issues within the autism community that need attention and action now. This April, people should be asking, "What is one thing I can do this month that will make a real difference in the life of a person with autism?" I am aware, so what else can I do?

Autism Services, Medical Assistance & Insurance Mandates
When a child is first diagnosed, parents are often left with no idea where to even start to look for services or how to pay for them. Once parents decide on a therapy or doctor, they often find out that their child's medical condition, autism, is not covered by insurance. Insurers have essentially been allowed to discriminate against children with autism by denying coverage for developmental disabilities.

The fight has been slow, but state by state, legislators have been enacting laws to mandate insurers to cover autism services. However, what is troubling is that even with new mandates, insurers are still finding loopholes that allow the discrimination to continue. For example, in Pennsylvania, we have Act 62, which requires insurers to pay up to $36,000 per year in autism healthcare services. However, many children with autism are still not covered by their insurance. Why? Because the law that was passed, allows "out of state" insurance companies and "self insured plans" to be exempt.

As a result of no insurance coverage, many parents seek out Medical Assistance (MA) to pay for autism related services. But as many people know, legislators at both the federal and state levels are cutting MA to children and adults with disabilities without a blink of an eye. Sure, these same legislators will tell parents they "care" about kids with autism during election season. Who is actually going to say they don't care about kids with autism? But when push comes to shove, they don't care enough to fund programs like MA or vote for mandates that do not allow exemptions.

Now is the time to write those same legislators and let them know what autism really means to you. Insurance companies are busy making money hand over fist while kids and adults with autism are being discriminated against. It is time for this practice to end. If we really want to cut MA services to kids with autism, parents need assurance that their private insurers will cover autism.

Education Cuts
It is no secret that certain state and federal legislators embrace cutting education funds. While I agree that throwing money at education will not solve major issues, cuts on the other hand, will have a devastating effect on many children. Technically, children with disabilities have the right to a free and appropriate public education (FAPE) mandated by the Individuals with Disabilities Education Act (IDEA). However, without sufficient funding, it is likely both typical children and children with disabilities will end up with poor quality programming, larger class sizes and less chances for social interaction, which is especially important for kids on the spectrum. So again, legislators need to not just be "aware" about autism. They need to understand that cuts to special education will adversely affect kids with autism.

In all honesty, I think certain legislators really do understand that cuts to special education directly hurt kids with autism but they simply don't care. There is a frightening lack of compassion in today's political environment which is pervasive among certain legislators and the constituents who support them. If they are not capable of compassion, they should, at the very least, consider the long term consequences of their short sighted decisions. These kids will not simply go away. They will grow up and become adults with autism. If you don't provide them with an appropriate education today, our kids will grow into adults who may become a burden to society in the long run instead of becoming independent and productive citizens.


Quality Autism Programs in Education

As many parents of children with autism know, finding a school district, principal or teacher who really "gets" autism can be difficult. Sure these same folks are "aware" of autism, but many districts don't understand autism well enough to implement inclusion correctly, appropriately modify autism related behaviors, cultivate social skills programs, follow best practices, etc. The lack of which ultimately leads many districts down the road of not providing FAPE or not doing it in a fiscally responsible way.


Instead of focusing on big ticket items such as placement decisions, many times special education administrators nit pick small, no cost disagreements which force parents into mediation or due process. Even when individual education plans/programs (IEPs) are agreed upon in a team decision, parents often have difficulty getting schools to adhere to the IEP. As a result, parents and districts often find themselves in costly disputes that taxpayers end up paying for in the long run. It is time to stop with the nonsense, respect parent input as members of the IEP team, use best practices and focus on the priority of educating kids with autism. In addition, the Department of Education should start identifying schools which do implement best practice autism programs so that districts have examples of what best practice schools actually look like.

With 1 in 110 kids being diagnosed with autism, parents are looking for quality, often inclusive programs that provide FAPE for their children because we are looking at the end game not just a class or a grade. Will the child be able to function independently when they are 21? Or will they be living with us for the rest of their lives and relying on public assistance? For some kids with autism, independence can be an attainable goal if FAPE is met. For a school to merely be "aware" of autism or say they teach kids with autism is simply not enough anymore.

Seclusion, Restraint & Aversives
In May 2009, the Government Accounting Office (GAO) published a report entitled "Seclusion and Restraints: Selected Cases of Death and Abuse at Public and Private Schools" 1which stated that there were no federal laws prohibiting seclusion and restraints in schools. The same month, the Council of Parent Attorneys and Advocates, Inc (COPAA) published a report, "Unsafe in the Schoolhouse: Abuse of Children with Disabilities" 2 which documented the pervasive abuse of seclusion and restraint in American schools. In January 2009 and again in 2010, the National Disability Rights Network (NDRN) released a report "School is not Supposed to Hurt." 34 Yet even with these compelling reports, two years later, there still is no federal law to protect our children from the abuse from seclusion, restraint and aversives. Although a strong bill was introduced to ban the abuse of seclusion and restraint, H.R.4247, it was watered down in the senate and consequently, there is still no federal law that protects our children from seclusion, restraint and aversives.

As a parent of a child with autism, I find it appalling that legislators have failed to protect our children. Today, as I write, children with autism are regularly and legally restrained and secluded against their will. What is even worse is the fact that seclusion, restraint and aversives have been proven to be an ineffective way to modify behavior. In fact, it actually increases behavior in many children, and has the potential to cause physical and long lasting mental damage to a child. Yet this archaic practice is still being utilized in many American schools.


This issue is of particular importance to me since I have personally experienced a situation where a school principal built and used a seclusion room in our nice, little, suburban elementary school without telling parents or the school board...never even got a building permit. The consequence of the event? There was none. The state department of education did a cursory investigation to make sure the room, made with concrete walls and floor, was at least 28 square feet (the size of a small walk-in closet). Then they basically washed their hands of the incident, since the seclusion room was merely reported to them and no one filed an "official" complaint. If only the child who the room was built for could forget what they did to him as easily. In the theme of no accountability, the principal responsible is still working at the same school today...even after admitting to a room full of parents and his supervisor that he had no expertise in autism or running an autism program.


Yet if a parent had built a prison like, concrete room for their child in their own home, they would likely be arrested for child abuse. So how and why does this continue to be an acceptable practice in education? Why are our disabled children being treated like prisoners instead of children with disabilities? And if school districts have the money to build seclusion/solitary confinement rooms then they must have the money to build comfort and/or sensory rooms.

At the heart of this issue, many schools lack even a basic understanding of autism, why behaviors happen and how to modify behavior using positive behavior support. Often, our children cannot speak or communicate well, so they use behaviors as a form of communication to get their needs and wants known. Because school staff do not understand these behaviors as a way for the child to try to communicate, the child is punished. Behavior is a complex topic and understanding behavior at a granular level is what is really needed for kids with autism. This means if a school has an autism program or teaches kids with autism, they should have a board certified behavior specialist on staff to perform Functional Behavior Assessments, write positive behavior support plans, ensure the collection of goal data, analyze data and train staff to ensure consistency of the implementation of the behavior plan across all settings.

Today, not later, our legislators need to pass a strong bill like the original H.R. 4247 which would have prohibited schools from writing seclusion, restraint and aversives into IEPs. Legislators need to start listening a little more to parents and advocates who know about autism and behavior and a little less from school administrators who think they have a quick fix to behavior in the way of seclusion, restraint and aversives. I encourage parents and those who truly care about children with autism to write your representative and senators and tell them they need to pass a strong federal bill to address the abuse of seclusion, restraint and aversives. Now is the time for this abusive practice to end in America's schools.5

Wandering is very serious issue in the autism community. It is a sad but too often occurrence that we read about a missing child or adult with autism who has wandered, is missing or who died as a result of wandering. While it is true that sometimes our children elope out of frustration, they also sometimes wander for no reason. Children who wander deserve protection so that they are safe, and the autism community needs real solutions now.


Currently there is a disagreement in the disability community about whether or not to add a ICD-9-CM diagnostic code so that doctors can identify/track children who wander. Many parents need help finding and accessing wandering solutions such as alarms, GPS, etc. and we often seek the advice of a doctor, especially when our children are newly diagnosed.. In my opinion, if an ICD-9 code can assist doctors to identify/track wandering and to advise parents about wandering and strategies to prevent it, there should be no question about adding the code.

As far as schools are concerned, we need teachers who understand eloping, why it happens and how to effectively manage wandering without resorting to seclusion and restraint. We also need law enforcement training across the country that helps officers understand autism and wandering. Our children often have trouble communicating so even if they do find a police officer, they may not be able to tell him/her what is wrong or where they live. In addition, we should modify the Amber alert criteria so that it includes children with developmental disabilities. That way we can find our children more quickly if they wander off and get lost.


Adult Services
For parents of children with autism, life after 21 years of age leads to a great abyss. After 21, the school is no longer responsible for the child, and there are little to no services for adults on the spectrum. In Pennsylvania, an autism waiver currently exists which provides monies toward services to help adults with autism at home and to participate in the community. Pennsylvania also has an Adult Community Autism Program (ACAP) which provides physical, behavioral and community services to adults with autism. However, due to recent legislature changes and limited slots for both waivers and ACAP, the programs are in jeopardy, and there are not nearly enough slots for the adults who need services (6).

The fact is that if we don't help adults with autism become productive, there are at least two negative consequences. First, the adult with autism may not be able to work and will sit unproductively at home. In fact, the state may end up have to take care of the adult, which can be quite costly. Secondly, a family member may have stop working to care for the person with autism which negatively affects the economy as well.

Instead of simple autism awareness, warnings about the number of adults with autism and the lack of services should be sounding this month for all to hear. There is a tsunami of children with autism at the moment who are about to crash onto the shore of adulthood. Legislators can choose close their eyes to the crisis, continue down the path of short sighted cuts to adult programs and autism waivers, or they can choose to actively address the impending crisis by proactively working with the autism community to create cost effective solutions.

Parents can start writing and calling legislators now to help the children who are currently turning 21. Educate them about the crisis, let them know that are no adult autism services and that cutting existing programs/waivers is unacceptable. Become involved and understand that your little Johnny will someday become adult Johnny. A child with autism will spend most of their natural life as an adult with autism, not as a child. Parents do die eventually, and if there are no tangible solutions, the state will end up having to care for more and more adults with autism often in a very costly manner.

Support Parent Choice
As many people in the autism community know, there are many issues that divide us. From vaccinations to homeschooling, we don't always see eye to eye. In my opinion, our differences are not only a natural occurrence but also not necessarily a bad thing. Yes, we all have children on the spectrum, but not all of our children are even remotely the same nor are we. Some kids are high functioning, some are not. Some kids are verbal, some are not. Some kids have severe behaviors and some do not. Some kids have regressive autism, some do not. Some kids get diagnosed early, and some kids don't get diagnosed until later in life. Some parents have toddlers with autism, and some parents have grown children who are now adults with autism. Some parents embrace homeopathic/alternative medicine and some prefer western medicine. Some people in the autism community are parents and some are adults with autism. Add to the mix the fact that we all bring to the table different levels of education, cultural backgrounds, political ideologies, and religious beliefs, it should be expected that we all have differing opinions on all kinds of autism topics.


That being said, it is my belief that parents should have choice about how they raise their children and treat autism. Autism organizations should be telling legislators, doctors and educators what we do know about autism but also educating them about what we don't know...which frankly is a lot. Let's face it, things are not black and white when it comes to healthcare and autism many professionals would lead us to believe. Even the most effective treatments for autism are not effective all the time for every child. For example, when legislators pass a bill that only covers Applied Behavior Analysis (ABA), one might imply they are telling parents what treatment to use. And I understand that they want to avoid paying for treatments they deem are experimental, but when it comes to autism, there are not that many tried and true treatments. Sure, ABA was great for my son and it worked well for him, but I would never assume that ABA is an effective treatment for every child.


The bottom line is that parents need the freedom, which we are supposed to have in America, to raise our children with autism the way we see fit. We may all not agree on exactly how to raise each child with autism or the best autism treatments, but parents want, need and deserve choice. So whether it comes to diets, therapy treatments, vaccination schedules or education, etc., parents should be able to make these decisions as a personal choice as they would any other healthcare or family decision. Their doctor, their school, their child, their choice.


Autism Awareness or Something Else?

It really is a tough call. Yes I want autism awareness. But I know in my heart that awareness is just not enough. Maybe ten years ago, it was a good place to start. But now I feel so many people are "aware" of autism. All year round, people see my autism ribbon on my lapel and the sticker on my car. I rarely run into people anymore who ask me, "What is autism?" They know. They have a child, niece, nephew, grandchild, neighbor or friend with a child who has autism....sadly because there are so many children who now have autism.


When I think of all the time we spend this month on awareness activities, I would like to see at least half that time spent on focusing on real solutions to current, serious autism issues that affect families. Yeah, maybe writing a legislator won't provide more research money or find a cure for autism. But right now, parents are in the trenches in dire need of help, and they need more than awareness. Children with autism and their families need understanding. They need compassion. They need legislators to put their money where their mouth is and fund autism services and education. Parents need schools that really understand autism, positive behavior support and FAPE.

So the next time someone asks me what I am doing for autism awareness month, I am going to tell them I am writing my legislator to plead that they don't cut funding for my son's services, that they help us help adults with autism find and keep employment, that they pass laws to protect my kid and other kids from the abuse of seclusion, restraint and aversives. I will continue to help my son and other parents find strategies to help them navigate the labyrinth of services and difficulties they face getting FAPE.

Yes, I will still be wearing my autism ribbon, but it may be time to change the focus from "What autism is and how to recognize it?" to "What can I do today, right now, to help kids, adults and families affected by autism?". As a parent of an older child with autism, I am already there, and I know many other parents just like me are ready to go down that path too. The truth is that for many of us, awareness is simply not enough anymore...and it is time to raise the bar.



1 Government Accounting Office (GAO), May 2009, "Seclusion and Restraints: Selected Cases of Death and Abuse at Public and Private Schools"

2 Council of Parent Attorneys and Advocates, Inc (COPAA), Jessica Butler, May 2009, "Unsafe in the Schoolhouse: Abuse of Children with Disabilities"

3 National Disability Rights Network (NDRN), 2009, "School is not Supposed to Hurt."

National Disability Rights Network (NDRN), 2010, Update: "School is not Supposed to Hurt."

5 Thank you to Phyllis Musumeci, Families Against Restraint and Seclusion, for helping review and provide feedback on Seclusion, Restraint and Aversives.

6 Thank you to Jane Thurston, President of the Chester County Autism Support Group, for helping provide information and feedback on Adult Services.

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Want more information about Autism Awareness Month?  Contact the Autism Society of America to get more ideas about what you can do this month!

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