• Parents in a support group are introducing themselves and sharing a bit about their child with autism. One parent begins with this, “I have a high-functioning child; he isn’t retarded”, and goes on to describe the very challenging behaviors that are impeding his son’s activities of daily living at home and school.
• At a social gathering for parents of kids on the spectrum, one parent of a boy is observing a girl with autism. She says to the girl’s mom, “I heard that girls with autism are much lower-functioning than boys. Is that true?”
• A therapist is reporting to the parents of an eight year old the recent results of testing. She tells the parents that she is “functioning at the level of a two year old”.
• A couple is sitting in the feedback session following the diagnostic evaluation of their three year old child. The provider reports that their son does indeed meet criteria for autism and that he is “severely autistic”.
• On a listserv for parents of children with autism, one parent new to the diagnosis writes of her concern that her child will be placed in her school’s contained learning center (CLC) where “nonverbal kids with bad behavior” will negatively influence her child.
If you are not the parent of a child with autism, none of these scenarios may ring a bell and you may not have any feelings about them one way or another. These are simply terms used to describe kids with autism, right?
If you have a child with autism, it may not be that simple.
Like me, you may wince and feel a quick stab in your heart . . .
By now you know I wear two hats: provider and parent of a child with autism. And for the life of me, I can’t completely take one off for the other. I was a provider first. Then a parent. Then a provider again. For sure, I became a different provider when I was inducted into the parent-of-a-child-with-autism club. I have come to accept that I will never be able to not see and feel things with the eyes and heart of a parent and that this dual perspective can be valuable.
For a dozen years now I have wanted to address the topic of . . . what do I call this? It is sometimes referred to as Political Correctness (“being PC”). But that doesn’t capture it. It isn’t just the choice of words – but the underlying meaning and intent of what is said or implied. It seems it is also a matter of sensitivity and putting oneself in the shoes of those on the receiving end of these terms.
Let’s begin with what my colleagues who are Speech Language Pathologists (SLPs) have taught me about communication and the use of language and apply it to the above described exchanges of information. We use words to share information, be understood, communicate our wants and needs. We also communicate to learn, gather information, express feelings, and connect with others.
Let’s look at the five scenarios and process each in terms of communication and also sensitivity.
“I have a high-functioning child; he isn’t retarded.”
What the dad might be trying to convey:
It may well be that the diagnosis that the parent received for his child was “High Functioning Autism”. Perhaps the parent in the first scenario wanted others to know his child has strengths and is capable. Maybe he feels some responsibility for his child’s behavior. It’s possible someone referred to his child using “The R word” and it hurt so he reacts by pointing out that his child doesn’t have an Intellectual Disability. Or maybe he had a preconceived notion of what autism was prior to his child being diagnosed and he felt a need to point out that his child doesn’t fit that stereotype.
What he might not be aware of:
Does anyone want to hear their child described as “low-functioning” or “retarded”? By pointing out what his child is/is not, he points out what he thinks others are/are not. There is also an implication that “high-functioning” = good while “low-functioning” = bad.
Comparing and contrasting our kids to others isn’t helpful to anyone. Labels that divide us, or pit us against each other (whether parents or providers), are not helpful. Instead of making distinctions and using terms that are divisive, use words that describe your child’s unique strengths and challenges. It may take a few more words than lumping him into a category but others will probably get a better idea of just who your child is and will appreciate your sensitivity.
“Girls are lower-functioning than boys, right?”
What the mom might have meant to convey:
For sure there is curiosity about the minority of kids with autism – females. She may have just been curious about differences she observed or perceived.
What the mom might not be aware of:
It’s unlikely she intended to hurt anyone’s feelings but she was unaware of how raw the other parent was at the time when she was desperately trying to figure out where on that broad spectrum her child was.
Bottom Line: It’s probably best to avoid generalizations about our kids. Not all girls on the spectrum are the same. Nor kids with Asperger Syndrome. Nor kids with blue eyes.
“Your child is functioning at the level of a two year old.”
What the therapist might have been trying to convey:
The therapist reporting on the child’s testing likely sees this choice of words as merely conveying what she feels to be important information. Perhaps the parents have had trouble understanding why, despite much staff and parent effort, their child hasn’t made much progress. It could be that this information is meant to inform next steps or begin a discussion of the child’s trajectory.
What she might not have been aware of:
Does any parent of an eight year old want to hear their child described as functioning at the level of a toddler and an age known as the “terrible twos”? Does the testing assess all areas of the child’s functioning and are the results an across–the-board indication of the child’s current and future functioning? Even if the therapist was only referring to the child’s language level, parents may only hear “functioning like a two year old” and generalize it.
It takes great sensitivity to inform parents that their child’s level of functioning is far behind that of peers, particularly as our kids get older and the gap between them and their peers gets broader. This is a particularly difficult time for parents who are relatively new to the diagnosis and are trying to figure out their child’s trajectory. It can lead to many questions about the efficacy of/continuation of therapies and about school placement as well as an avalanche of feelings about dashed hopes, coming to terms with accepting that autism might just be forever. Rather than focus on an age level of functioning, parents will benefit more from hearing about their child’s unique strengths and challenges as it applies to what really matters to parents – that their child is doing his or her best and that he is getting the support needed to achieve this.
“Your child is ‘severely autistic’.”
What the provider might have been trying to convey:
The provider is likely trying to give the diagnosis in as factual a manner as possible. While many providers are not willing to offer an opinion as to severity and prognosis for very young children, some are. Parents may also insist on knowing where on the spectrum the provide thinks the child is.
What he may not have been aware of:
Hearing that one’s two year old is “severely autistic” can result in great emotional distress for parents and the message that there is no hope so why bother with therapies? It’s common for parents to initially feel responsible in some way for their child’s autism and hearing this might exacerbate these feelings.
Let’s hope this statement was preceded by lots of praise for the child’s and parents’ strengths. Even parents who may suspect autism prior to the evaluation will experience some emotion when hearing the “official” diagnosis. Be gentle in delivering the news of the autism diagnosis – this is a shock. Time is needed to let it sink in and to process what this means for a family. This is also a time when parents need to hear from you that there is hope.
“My child will ‘learn bad behaviors from nonverbal kids in CLCs’.”
What the mom might have been trying to convey:
She may be thinking that she has worked so hard on remediating her child’s challenges and worries that this will unravel in a classroom with kids with identified special needs vs. a general education classroom. She may have been told by a therapist that being around peers who are typically-developing is a good thing for her child. She may still be coming to terms with autism and is feeling protective of her child.
What she might not have been aware of:
We all would love it if our child could be successful in a general education classroom. We wish there were enough supports to allow them to be amongst peers all day. It’s inaccurate to think that all kids in CLCs are nonverbal and/or have disruptive behavior. Positive behavior can be nurtured and observed anywhere and respect for the diversity and frailties of others (i.e.: nobody is perfect, we all need help, it’s a two-way street) is often a first step in learning positive behavior. It may feel hurtful to parents and children who are in CLCs to hear your strong desire to steer clear of it for fear of their children “rubbing off” on yours. And is your child without any challenging behaviors at all?
What parent amongst us has not had a shiver run down their spine at “meet and greet” with your child’s new teacher and classmates? Is there not always a child or two that we wish our own child would not be influenced by? Come on, be honest! Kids in all environments demonstrate behaviors that we both wish our child to imitate and not be exposed to – on the playground, in the neighborhood, at school.
That said, CLCs get a bad rap. Gone are the days (thankfully) when they were labeled “Severe & Profound” and “Behaviorally Disordered” classrooms but what remains are different types of settings for kids with special needs. They are not perfect nor or they for everyone. But many parents are quite happy with their child’s CLC arrangement and would prefer it to a general education classroom where there are no supports in place for their child.
What Do These Terms Mean?
If you ask ten people what is meant by the term “high functioning” as it relates to a child with autism, you’ll likely get many different answers. A psychologist might say it refers to one’s cognitive ability – one’s Intelligence Quotient. An Occupational Therapist might say it refers to one’s adaptive functioning – how capably one manages activities of daily living – the tasks we do from the time we get up in the morning until the time we go to bed at night.
There are most certainly those who test lower in IQ who are quite capable in daily functioning, successfully navigating and managing self-care and life skills. On the other hand, there are those who score average or above average in cognitive testing, whose anxiety or depression or disruptive behavior is debilitating, thus preventing them from functioning to their capacity or potential.
So what defines and who decides what the term “high functioning” means?
My child is significantly affected by autism – my term for how autism affects her day to day. I know that “low functioning” doesn’t capture how she functions nor does it capture who she is. She is first and foremost my child. She is not a “low-functioning autistic child”. Some parents don’t find these terms insensitive and use them to describe their own child. Providers often use words that parents would prefer they not use. Not many parents, however, are willing to ask them to change their terminology – as my colleagues will attest when they read this from me today.
Forget “being PC”. I’d just like to encourage common courtesy and sensitivity to the receiver of your terms. Would we/do we refer to a child with cancer as a “cancer child”? Don’t we find it offensive when a person’s race is used in a description of them?
“Child with autism” is only one word more than “autistic child” yet the gratitude many parents feel is immeasurable. How about we take the time to describe our kids – their strengths and challenges – not with ambiguous terms but with sensitivity and respect to all on that broad spectrum called autism?