To Whom It May Concern:

I am an Occupational Therapist currently working in the educational setting. I have been a pediatric therapist for 16 years and have spent equal time in the clinic and in the school setting. I am currently developing some policy and guidelines for my District and inadvertently came across publications of due process hearings on the internet. While reading through a number of articles I became extremely disturbed by some of the decisions made. In many cases, parents were suing the school district for violation of FAPE. In one case, the parents were demanding more services to address their child'd deficiencies in the areas of pragmatic language and social skills; apparently the child was unable to decifer the subtelities of social situations and was having difficulties establishing special peer relationships. Well, what a surprise, the CHILD IS AUTISTIC!! I feel an increasing amount of resentment toward these parents that are demanding that school districts fund endless amounts of ABA, or now RDI, OT, Recreational THerapy, Music Therapy, etc.in seemingly futile hopes of making their child NORMAL. I feel all the negative energy of "going after" the school districts has become an unfortunate coping mechanism for parents who cannot accept their children for who they are. I beleive the focus should be on the child's strengths and supporting the child by loving him/her for who he/she is!

It would be extremely helpful to me as a therapist, and as always an advocate for EVERY child I work with, to understand the logic behind some parents expecting/demanding the school systems "fix" their children or pay...
Thank you for your time.
Respectfully,

Jane Doe, OTR/L

Dear Concerned Occupational Therapist:

I do feel that it is important for professionals to understand where parents are coming from, and therefore wish to respond to your concerns. Our website is geared towards educating the public, primarily parents but also others, including those, like yourself, who work with these children.

First of all, I want to clear up your misconception that parents want the school district to “fix” their child. Certainly all the parents I know and represent, including the one that I work with and whose child I love as my brother, love their children for who they are and are not trying to “fix” them. In fact, in this day when so much focus is on “finding a cure,” there are still many parents out there who celebrate the unique gifts that their children have that may also be connected to their autism. For examples of that, I hope that you will come back to our site soon and see our article on our 4th of July parade float, where the unique talents of many kids were celebrated.

Having said that, while parents are not seeking a “fix” they are certainly entitled to seek services, supports, therapies and accommodations to give their child the opportunity to make progress, have friends, and one day be an independent and productive parts of society. This means not only focusing on their strengths, as you put it, but also on supporting their weaknesses. For kids with autism, it is true that a social communication deficit is at the heart or core of the disability. But I disagree that that means a parent should accept this and not ask for services or supports which could enable the child to make progress in these areas. This is what they are entitled to – a program that meets the unique needs arising from their child’s disability. It is not only about academics. Because the larger world is not only about academic skills. It is about becoming socially, emotionally, behaviorally, and academically prepared to face the world after school.

If you are looking for further information, I suggest you go no further than the very beginning of the law itself – the federal Individuals with Disabilities Education Act, or Individuals with Disabilities Education Improvement Act (2004). You’ll find an answer to your resentment right there in the congressional findings – where Congress found the following:

ë Disability in no way diminishes the right of individuals to participate in or contribute to society.
ë Improve educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.
ë The implementation of appropriate services for students with disabilities was “impeded by low expectations” for children with disabilities
ë 20 years (now 30 in new law) of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children, strengthening the role of parents, ensuring the special education is a service and not a place, providing appropriate special education and related services and aids and supports to children.

After making such findings, Congress enacted the IDEA, which guarantees the right of children to a free and appropriate public education (FAPE) based on their unique, individual needs. If you read this act, you will find that many of the services you refer to as “seemingly futile,” such as Recreational Therapy, were specifically identified by Congress as related services to be provided for kids with disabilities.

Then lets look at the research. In addition to the research on which Congress based its findings, years of research has confirmed that early intervention works, and that the prospects for kids with autism, learning disabilities, and other disabilities is much better if they have intensive intervention. Start with, for example, the book Educating Students with Autism, which was published in 2001, and based on significant research. Or read “Overcoming Dyslexia,” by Sallie Schaywitz. These and numerous others support the need for early, research based interventions for these kids. You mentioned RDI (relationship development intervention), and certainly Dr. Gutstein’s work is of the more recent research on this topic. Dr. Gutstein’s findings support that interventions make a positive difference on the prognosis for the child.
The days when Autism is seen as a sentence to a life without friends, without meaningful communication with others, are over. No, we are not trying to “fix” the child, but we are certainly trying to give the child all of the strategies and tools that could help that child function in the world.

What you seem to be the most concerned about is funding – which is probably the source of your “resentment.” On this too, I ask you to do further research before you develop such strong feelings. First, funding for special education programs is specifically set aside according to federal and state laws, so it is not coming out of what $ could be used for other school programs. Second, children with disabilities become adults with disabilities, and we as a society are either going to spend money on them earlier or later. If we educate our kids appropriately, provide services in their areas of deficit, and support them into the transition into adulthood, there is a greater likelihood that they will be able to be productive members of society. If we give up on them because they have a disability, so we think it is useless to expect them to learn these skills, then we are guaranteeing the need to provide for these individuals for the rest of their lives, because they will not be successful independently. And yes, this even applies to the subtleties of friendships and peer interactions. Because they not only have to learn job skills, but how to survive in a workplace, where interactions with others are necessary. Research also supports that people who have positive relationships in their lives are healthier.

But beyond the law and the research and the funding, what we are talking about is children. And, with all respect, if you don’t have an autistic child close to you in your personal life, it is probably difficult for you to understand what it is that parents are seeking.

I don’t know of many parents who are in denial about their child’s disabilities. I’m sure that there are some out there, but typically the ones to come to us for help have fully accepted their child’s condition, and have accepted what the child’s unique needs are as a result. Typically, what they are seeking first and foremost from the school district is their acknowledgement of the child’s needs. Unfortunately, there are many people who do not understand what is currently known about Autism – that the spectrum encompasses a full range of capabilities, strengths, deficits and needs, that early intervention increases the chance of a higher level of functioning, that yes, even Autistic kids can learn the “subtleties of social situations” and have peer relationships. And if that is possible –and far from “seemingly futile,” why shouldn’t any parent want that for her child?

I hope that you will not stop with what little exploration you have done. Please talk personally to parents who have kids with disabilities. Read the law, read the research. It is sad to me that persons who are in this field – providing services to students with disabilities – have such strong “resentment” towards these families. And I know that you are not the only one. There are many persons in our society who do not, as you say, understand the perspective of these parents, and see what they are doing as “futile” and wasteful of resources. It was one of the initial goals of the IDEA to eliminate the prevalence of such misunderstandings. For me personally, it is part of why I do what I do… I am an optimist and remain hopeful that with each kid that is supported and becomes an asset to society, with each kid who makes friends with “typical” or “normal” children and therefore broadens their understanding of the world, with each teacher who learns the subtleties of autism… we are closer to a better understanding in society in general, and only then can we start to talk about acceptance.

Thank you,
Carrie Watts
A2Z