Check out Sophia, a young blogger with her own site: “From Struggle Comes Strength.” She wrote an awesome post for World Autism Awareness day, discussing the autism community’s use of the words “high- functioning” and “low functioning.” Over on Facebook, the Thinking Person’s Guide to Autism re-posted the article, so check them out, too.
“Often, the way somebody functions can depend on the circumstance or situation. A student who excels academically is likely to be labelled ‘high’ functioning, but let’s say this same student struggles to speak on the phone, or has crippling sensory issues. It is probable that because of their ‘high’ functioning label, their difficulties may be underestimated or even ignored. Equally, those labelled as ‘low’ functioning may be underrated and their capabilities dismissed.”
Sophia’s point is especially important for families when struggling to get services. I have seen programs turn away individuals due to their perceived functioning level: “oh, she is too low functioning for this program,” or “he doesn’t need services, he is too high functioning.” Service providers don’t always individually assess each person with an autism diagnosis, assuming that everyone is the same. Likewise, when individuals transition to college or work settings, these labels continue to limit people as well.
Sophia writes from the point of view of someone labeled as high functioning:
“People with Autistic Spectrum Disorder, like myself, often experience overwhelming difficulties on a daily basis. The invisibility of this condition means that many do not recognise the extent of our challenges. By describing somebody as ‘high’ functioning, you are inadvertently implying that they do not require much support, or accommodations. After all, why would a seemingly ‘high’ functioning student require extra time to complete an examination?”
At WHOLE Families we work very hard to insure that people – no matter their label – get the services they need to be successful. That includes working with schools, agencies, insurance companies, and state and national programs. No label should determine the services you or your child deserves: the purpose of positive behavioral supports – for all people – is to help everyone achieve the best they can.
For college students, we have ensured test accommodations and seating arrangements; in high school we have helped students get laptops and sensory accommodations. We have helped two year olds transition into special education, and we work with pre-schools to provide stress breaks and quiet time areas within classrooms.
And WHOLE Families supports the words of people with autism, who are speaking out about what services are beneficial and what helped them.
If you are struggling to get services for you or your child due to labels about “high” or “low” functioning, we can help. If you are working with other agencies, cool, but be sure to ask for the services you need.
Sophia ended her awesome article with the best conclusion:
“Functioning labels are not necessary, instead respect the individual for who they are, and what they can do, and appreciate that ability to function may change on a daily, or even hourly basis.”
Get the services you need. Nothing more, nothing less.