dandelionI’m so confused.

As the parent of someone with autism, being confused is not new to me. Autism is confounding for the best and brightest among us. Just ask the top researchers and providers in the field. And with few solid answers, questions abound.

Old questions persist about what causes autism and what the best-fitting treatment is for each child. It seems we’ve moved past some of the early controversy about what causes autism and have separated the “wheat from the chaff” when it comes to evidence-based treatment. With advances in genetics, we’re getting closer to being able to target treatment to a child’s unique profile.

With broadening of diagnostic criteria to include those “on the milder end of the spectrum” came new questions about whether autism is a disability or a personality difference. Some self-advocates declared themselves “autistics” and turned people-first language upside down while others voiced that their preference continues to be “person with autism”. New terms such as “neurodiversity” and “neuro tribe” have popped up, suggesting that autism is simply a different way of thinking.

Some advocates have raised the opinion that contained learning centers (CLC) are tantamount to segregation and have called for an end to them, insisting that all children be included in general education classrooms. They don’t like the term “special education” citing that they don’t want special they want equal, that their child doesn’t want to be special, simply normal.

Similar issues have arisen again (remember deinstitutionalization of the 1970s for those in mental health facilities?) regarding alleged segregation of those living in the few institutions left in our state. If it is a large facility where more than a handful of people with disabilities live it must be bad.

Parents who apply for federal/state benefits and guardianship for their child or young adult are told they are sending the message that they don’t think their child will ever be a productive employed citizen. It is suggested that parents pretend that their child is more disabled than they truly are just to get help. Parents are asked why they would desire to have their child impoverished rather than fight for employment of those with disabilities.

Sadly, divisiveness exists, pitting one disability against another. It does seem that parents of children with autism are on the receiving end of criticism for trying to “fix their child”, for “forcing their child to participate in therapies”, particularly behavioral therapy, and for not just accepting their child as is. These are old arguments with a new twist, perhaps due to the large wave of children with autism who are now coming of age to young adulthood.

While healthy, respectful discourse allows for diverse opinions to be shared, there is concern when a few attempt to speak for all and when black and white thinking leads to espousing all-or-nothing solutions to complex questions. 

As a social worker and a parent of a young adult with autism, I’m an advocate for the ideals precious to all of us. Choice. Dignity. Independence. Quality of Life. Who doesn’t want these? Whether we’re 21 or 81.

The question that reverberates in my mind is this: Whose choice is it anyway?

Who gets to decide what is best for whom? Is someone with autism able to speak for another with autism better than the parents of that person? When I think of a total stranger who doesn’t recognize the difference between himself and my child presuming to understand her or know what’s best for her, I get weak in the knees.

My child has a disability that globally affects her functioning.

There. I’ve said it.

Call me a bad mother, but autism is not her personality difference nor her super power.

Yes, her brain works differently than most but what that means for her is unique and can’t be compared to anyone else, even if they have autism. Not all disabilities are the same. We’re not talking about a homogeneous group of people. Severity varies widely even on the autism spectrum and needs are different. There is no “one size fits all”. I’ve come to realize this on both a personal and professional basis.

Over the years I’ve compared notes with my sister who has a son with Down syndrome. My daughter is older but he is much more capable. He’s independent in most all of his daily routines, has always slept well, can be left alone for periods of time, has no behavioral issues, desires to be and is active in many things. He has older brothers that he looks up to and learns from. He wants to be like them. Will he need support and some oversight once he’s no longer living at home? Yes, but not to the extent that his cousin does. She has never had a desire to have friends, to be like her peers. Much to his chagrin, she has not shown any interest in her brother despite his herculean efforts to engage her and his years of assisting her in every way from changing pull-ups to chauffeuring her around.

I hear this same story play out in the lives of many families we serve. Not all but many, particularly among the most significantly affected by autism.

If you don’t live with autism, you likely know the core features of autism are social/communication deficits and repetitive behavior/restricted interests.

Those who do live with it know that these are often not the most challenging aspects of autism.

Many families have kids with severe behavioral challenges, significant sleep disturbance, overwhelming sensory issues that leave them feeling miserable in their own skin, feeding problems, and unsafe behaviors such as elopement and pica. These are stubborn and difficult to treat problems. Many also have intellectual disability, which further compounds matters.

For many kids such as these, parents would be considered negligent if they chose not to seek treatment. Just ask any parent who has had Child Protective Services (CPS) called on them. Not seeking help also increases the risk for isolation, desperation and abuse.

How is it that some see a CLC as segregation and others see it as specialized instruction fitting the needs of the child? A CLC has always been a good fit for my child. Did I worry that she wasn’t among typically-developing peers or that she would learn “bad behaviors” there. No. I assured she had plenty of opportunities to be among non-disabled peers (which by the way she couldn’t have cared less about) and as my husband who teaches general education fourth grade will tell you, “bad behavior” exists in every classroom, as does “good behavior”. He also will tell you that he has kids in his class who have IEPs.

I worked for years in senior housing, retirement and assisted living, where people live fairly independently with conveniences and supports in place to make life a bit easier. That was not ever considered segregation. And this is a potentially vulnerable population of people, similar to those with developmental disabilities.

Is it bad if parents desire that their young adult children live amongst each other in a community setting that provides whatever supports needed to be as independent as possible? What message do we send them if we tell them that it’s better if they live among people who don’t have disabilities, that we don’t want them living with people like them?

Inclusion, living in one’s own house or apartment amongst “regular-old-people” in “the community” and receiving all the supports and services one needs is the ideal that is being sold. We’re painted a picture where neighbors look out for each other and get to know each other. But ask parents whose young adult children live there what their reality is. Too often the reality is that the agencies that support our kids have difficulty finding apartments or houses that will accommodate them due to high rents, limited funds for rental, and few landlords who accept Section 8 vouchers. It may be illegal to discriminate against those with disabilities when it comes to housing but try proving it.

Parents have shared that when they do find a house or apartment, neighbors call the police about the noise their children make. They are not looked after by neighbors nor invited over for a barbecue or to watch the game. I have a cousin with cerebral palsy who lived in an apartment for many years with some supports. His parents passed away years ago. He got around fairly well independently but recently asked to move to a house with several people as he felt lonely. He wanted to be around others like him. It was his choice. 

We’re told that settings where more than two or three people with disabilities live increase the odds of neglect and abuse. But the case can be made that vulnerability exists in any setting. Who is more vulnerable – the client in a home where there is more than one staff and other clients or the client alone with one staff? Staff turnover is high, oversight is less than optimal. Living in “the community” doesn’t change that chronic problem in caring for those with disabilities.

If someone with severe aggressive and or self-injurious behaviors- that have been treated yet persist- isn’t supported appropriately in a community supported living setting, where are they to go? What other options exist for them? States are criticized for not closing large facilities but it is not the state who wants them to remain open. States have been trying for decades through attrition to phase them out. It’s the family members and clients of those who live there and are happy there that keep them open.

Would their parents prefer that they were able to live independently, work gainfully, and live the American dream? Yes, of course. But for many people this isn’t their reality. Just keeping them safe from self-injury or other family members from aggression may be the priority.

It all seems to come back to choice, to having options that meet a diverse population with unique needs. And respect among all for these differences and the choices that fit each individual rather than a group. And let’s not forget money. It always comes down to money. Who pays for it? How many of us can afford to fund every aspect of our adult child’s life expectancy when we don’t even have our own retirement savings in order? Truth is that there isn’t much choice if the funding source only offers one option.

Ultimately we all want our kids to have a good life – however that looks for each one. Arguments that pit parents against parents or disability against disability are unhelpful. Let’s end the rhetoric which leads to defensiveness and divisiveness. Let’s keep the discussion going respectfully and mindfully.