Nothing makes The Expert Ally happier than being able to help an educational team understand a child with autism. I live for those moments when I say something, and, all of a sudden, there is light! For example, a few weeks ago I walked into a meeting for a preschool-aged boy who has only recently been diagnosed with autism. Let's call him Ivo. I brought up evaluating him in the area of sensory functioning and there were no signs of life coming back from the team... dead silence... no signal. The team chair said, "We do not believe in working with sensory needs here in our town. There is a difference between the school model and the clinic model." As an aside, I hear this a lot, and I get it.
But The Expert Ally knew what to do because when the team members were giving updates, she had her antennas out for helpful information and asked good follow up questions. So I looked straight at the boy's teacher and said, "You know how you said that Ivo touches other children all the time? This could be because he has tactile differences and needs to touch. And you know how you said that he bumps into other kids all the time? This could be due to body awareness issues. And you also mentioned that he sings but does not gesture to songs during morning circle? It could be that he has motor planning challenges and either cannot imitate arm movements or cannot do it while also managing the demands of singing." Lo and behold, as if a circuit turned itself on in her head, the teacher's eyes flickered with understanding, and she started nodding enthusiastically. Turning to the occupational therapist, I continued, "You know how in your evaluation you noted that Ivo gets silly and giggly once in a while? This could be because of his challenges monitoring and regulating his arousal level." As I looked around the table, now all team members' eyes were alive with understanding. Everyone was nodding. Not only did we agreed to evaluate Ivo in this area, but the team made a connection between what they observe Ivo do and a piece of his autism profile. Moments like this are what I cherish about my work. They are only possible when team members are ready to listen.
What I find the hardest for teams to understand are the children who have "mild" or "high-functioning" autism. The term "mild" comes, I assume, from DSM-V diagnostic criteria for autism, which includes qualifiers of the severity of the condition from mild to moderate to severe. "High-functioning" usually means that a person on the spectrum does not have an intellectual disability. As used in real life, both terms seem to imply that a "high-functioning" person or a person with "mild" autism is on the spectrum, but is less affected and than those with the same condition who have "moderate" or "severe" autism, or are "low-functioning".
I have recently attended an IEP meeting with a family of a middle school girl who was diagnosed with autism in early childhood. I'll call her Lily. Lily has been on an IEP for years and has done well. In her most recent three-year re-evaluation report, which we were reviewing, the school speech and language pathologist noted a long list of social pragmatic vulnerabilities, such as difficulties with asking others to change their actions ("please move"), negotiating, managing her negative emotions, responding to constructive feedback, reading social cues, understanding others' emotional states, fluidly using non-verbal language, understanding tone of voice, managing personal space, participating in a large group conversation, reading and responding to subtleties of social situations, understanding non-literal language and humor, and a few others.
Now stop for a second and imagine being a girl in middle school who has these difficulties. Imagine managing all that middle school is and navigating all its complexities while being at a disadvantage in these skills that are so important in the lives of middle school girls. Every conversation is a hurdle, every interaction a minefield, every joke a puzzle every minute of every school day. It would be very trying.
But the report from speech and language pathologist was full of cheer. She pronounced these challenges to be "mild" and stated that they "are not negatively impacting" Lily. Moreover, she did not hesitate to add, Lily's "mild" challenges "do not rise to the level of disability."
I need to slow down here because I am hyperventilating. That a professional (professional!!!) made these assumptions based exclusively on an observation is mind-boggling. She did not ask Lily about her subjective experiences and didn't ask Lily's parents either. She never noted as a limitation of her report that this information was not considered. That Lily has tremendous anxiety; is often upset at home about things that happened at school; often takes weeks, months and even years to process school-related incidents; and is often exhausted after school and has to stay in a dark room for hours to feel refreshed... All of this never entered into the equation because the speech and language pathologist was content to base her conclusions on what was easily observable. When parents relayed to the team all the difficulties they witnessed their daughter having, the answer was, "We do not see anything. We see her in class and she smiles all the time." What do they expect Lily to do in class? Cry because she has autism? "We see her in groups with peers." Have you listened to her in those groups of peers? Have you observed her keeping up, chiming in on time while picking up on all the nuances? The answer was no, they have not listened to the quality of interaction. But I do not need to observe Lily to know her struggles.
The team found the Lily ineligible for an IEP. Lily, the girl with "mild" deficits, which do not "negatively affect" her and do not "rise to the level of disability." The girl who has meltdowns several times a week. The girl who has frequent panic attacks. The girl who begs to skip school. The girl who bristles at jokes. The girl whose eyes well up at the tiniest perceived criticism. The girl who overshares. The girl who lives in fear of making a mistake. The girl who is always exhausted. The girl who has no friends. The "high-functioning" girl.
This is a very common situation. Educational teams often have a hard time seeing autism in diagnosed children with average and above-average IQ scores who do not have behavioral problems. Even if these same professionals could recognize autism-related challenges in these children in previous years, in middle school all of a sudden they tend to resort to the types of attitude like
"He/she is very smart, and just needs to make an effort" or
"He/she can do all of it with prompting," or
"We do not question the autism, but it does not manifest in school," or
"I believe that he/she can do well and I encourage him/her to try."
This becomes especially problematic when these kids enter middle school, perhaps because by then they learn to hide and compensate for their challenges so well. As school professionals like to say, they learn to "look good." And very often educational teams will unquestioningly assume that if they do not see a child being challenged, this child in fact is not experiencing any challenges. And just as often, unfortunately, the teams will also assume that parents are "over-worried" in insisting that their bright, academically capable, pleasant child is struggling.
And here is a thought I want to share. Adam Walton is a prolific autistic blogger who writes under the name of The Proud Aspergerian. I have never seen anyone express this truth better. Since I came across this quote, I have used it in several meetings and it seems to drive the point home, as long as the team is prepared to listen.
With this, I feel, there is not much to add. Except that, when applied to autism, "mild" and "high-functioning" are terms that do not have much specific meaning. At one or another autism-related conference, I once heard Dr. Daniel Rosenn, a notable Boston psychiatrist who works with individuals on the spectrum, speak on the subject in a way that resonated with me. He said that if a person with autism is described as "high-functioning," somehow there is an assumption that they suffer less and experience less mental pain that those who are "lower functioning", but it is absolutely not true. To add to this, the "high-functioning" status does not imply that a person functions well with regard to daily life tasks. On the contrary, a recent study showed that the term is misleading and is based on an incorrect assumption that higher IQ scores are associated with higher ability to manage daily life.
All I ask is that you keep all of this in mind when you encounter an individual who is described as having "mild" or "high-functioning" autism. "Mild autism" does not describe an autistic person's subjective experience, perceived level of distress, or coping abilities. It only describes how the person's presentation measures up according to specific diagnostic criteria. "High-functioning" autism does not relate to a person's ability to function. The term only means that the person does not have an intellectual disability.
Autism affects every domain of functioning, but each domain is affected to a different extent and in a different way in each person (see this research study for an example), resulting in endless variability of profiles and a need for individualized supports. Each person is affected across all domains, and can have significant strengths and even be highly gifted in some of them while experiencing deficits of varying severity in others. Take the time to learn about what is easy and what is difficult for each individual on the spectrum. Ask the person or ask the people who know him or her well. Above all, do not make assumptions based on what you see. In autism, as in many other things in life, there is always much more than meets the eye.
Additional reading: I recently came across this amazing blog entry offering a perspective on the misconceptions around what the autism spectrum is. If you are serious about understanding autism, I would highly recommend reading it.