It is autism awareness month. Most people already know a lot about what autism is, so I think it is important to talk about the services we are offered in schools this month. People with autism are frequently mistreated in the school system and it is important to think about what free and appropriate really means. We are often automatically put into classrooms where teachers assume we have limited mental ability simply because we cannot speak.
It is important to think about what free really means. If a family has to spend thousands of dollars on private teachers and therapies for their child to get an adequate education, is it really free? If a family has to find or train staff for a school, is it really free? The answer to both of these questions is no, but uncooperative school districts are a fact of life for many non-speaking autistics. Do they realize how much progress could be made in a school day if only their supports or “therapies” were worth the time? Some things that would be worth the time include meaningful and age-appropriate academic content, activities of daily living work from someone who understands the motor planning component, therapies working on hand-eye coordination, exercise that understands motor planning, and social opportunities with peers that support communication who are both neurodiverse and neurotypical. It is important to focus on activities of daily living that are age-appropriate, as some may feel insulting to work on past a certain age. For example, toilet training has no place in school past elementary. While school services are technically free, if you want to live a decent life as a non-speaker, your family better be prepared to pay up.
I spent (and wasted) years in their free speech and occupational therapy. All it left me with was a communication system that I couldn’t express my true voice with and endless frustration. Fancy AAC setups can be good in theory, but bad in practice. With people with motor planning difficulties like me, frequent mis-hits are likely with that many icons. Schools rarely understand that this is why those devices are rarely used. The only time they are is when kids are asked to request food because they know they won’t get food otherwise. It took my family spending thousands of dollars to get me a communication system that was truly worth it. All people with disabilities should be able to get a truly free education, not just people who can afford to support their education to make it worth something.
Appropriate education is something else entirely. We are put into inappropriate classes based on test scores that require motor planning skills we don’t have. If someone’s motor skills fail them so badly that they cannot speak verbally, why do people assume the rest of their body will work well enough to prove their intelligence? For example, if you tell someone with motor planning issues to get the red book and they bring the wrong color, that likely does not mean that they do not know the color red. It likely means that they just couldn’t motor plan to grab the right one. I have no idea how school professionals don’t have that figured out yet. That lack of understanding combined with their constant thought that they are right and know what is best is a recipe for disaster for non-speakers. We are forced into classes where we learn baby things like the alphabet and counting to 10 forever until we can prove we know these things a certain percentage of the time, but little do they know, we have always known those things and just can’t prove it to you because our motor systems are terrible. Inappropriate education is provided because competence is not assumed.
So well stated, Mitchell. Thank you!
My son Ben was introduced to spelling as a means of communication at age 19 with the use of communication partners, where none of our own money was ever used to pay for it, and he continues to use it – now age 49 which means for over 30 years.
Wow! I am a teacher and a mom to an 8 year old son with LGS and Autism. Thank you for your insight and words of wisdom. I found it thought provoking. I think of my son and know he is capable of much more than he can express. But as a teacher, it is difficult to move past a concept until you feel it is mastered especially the early years. I guess the challenge is really how do we know when we can move on and when we need to keep teaching a concept.
Thank you so much for your amazing insight! I have twins with cerebral palsy, epilepsy and autism. Their receptive language is very high but they are non-verbal. Using the AAC is ok, but difficult because of their poor fine motor skills. I will look into a better communication system for them!