An Ode To An Autism Mother

This is an amazing talk about meeting your child where they are – that means encouraging and working on the talents and skills they have, following their lead and developmental timeline, and presuming competence at all times. 

This also means not restricting or taking away their “obsessions” or “fixations.” This means not comparing them to others. This means caring less about how they “function” and more about what makes them excel. This goes for all children, not just autistic or special needs.

When you support them and their interests and accept them for who they are, not only will they flourish personally, but they may even devote a wonderful TedTalk to you one day. 

We All Need Help

You get up in the morning with to the sound of an alarm clock. The house is warm (or cool depending on how you like it) with the aid of programmed thermostats. Technology is wonderful and so useful. 

You make breakfast, or maybe someone left a smoothie or cup of coffee for you in the kitchen. Your house is clean because you had a maid in on the weekend. You take a shower and get dressed, listening to the news on the radio. Checking your cell phone, you can see the quickest way to work today would be to catch the bus at the corner. Some days, your co-worker sees you waiting at the stop and picks you up. You always appreciate the gesture and chip in a little for gas.

Lunch at work is being delivered by a catering company today, so you didn't make your own lunch. You get home from work and find your partner has a migraine, so you take over the evening routine and let them head to bed early. You know they would do the same for you. You make sure to prep the coffee maker for them for the next morning and make sure the car has enough gas in it for them to get to work. 

Sounds like a typical day, doesn't it? No one exists in a bubble without any help. Technology helps us get up and out the door. Friends, family members and co-workers help us get through our day in many ways. Are some forms of help more socially accepted than others?

We don't judge anyone for not getting a bus driving license and call them lazy or worse because they need to rely on someone else to drive a bus to get them to work. We also don't drive our own trains or fly our own planes (most of us, anyway), and that sort of aid is totally fine! Has anyone ever called you stupid for not being able to fly a plane?

We (typically) don't judge people who need house keepers to keep their house clean. We don't bat an eye when we have to order food from a restaurant instead of cook it ourselves. No one calls people weak or disabled or incapable for eating out. 

Yet, when a disabled person needs assistance for certain tasks, they are seen as weak, incapable, and even have functioning labels put on them (which I hate). If someone needs an aid to come to their house every morning, to get them out of bed, shower and dress them, they are seen as functioning at a lower level than the rest of us.

If a disabled person needs a cleaner to help with chores, they are seen as less than. If a non-disabled person hires a cleaner, they are seen as smart for making time for themselves and maybe even seen as somewhat affluent. Most of all, no one pities or chastises them for needing help. 

We need to think about the amount of help we all receive on a daily basis and we need to think about the judgements we make about others needing help. We all need help in different ways and at different times of our life we may need more. This does not reflect negatively on anyone's intelligence or capabilities. In many ways, help enables us to be more efficient, productive, organized and useful. Without help, we wouldn't get as far.

Why I Don't Like Functioning Labels

"We are all different - but we share the same human spirit. Perhaps it's human nature that we adapt - and survive" -Stephen Hawking

Labels are always such a loaded subject. They can also become a divisive issue for all of us. "High-functioning" and "low-functioning" seem to be medical terms applied by lay people, often with either a sense of pride or a hope for pity and commiseration.

I see the word "function" as an action that does something, but that's it. A car can function without doors and windows. A car can function with a broken horn. It can even function without a working speedometer or lights. It can function with just the last dregs of gas left. A car can function, quite loudly albeit, without a muffler. How a car functions has no bearing on the comfort of the ride, the speed you get there, or its safety.

Similarly, a person's "functioning level"  has nothing to do with the quality of their life, their intelligence or capability to contribute to society. Functioning is decided by outside societal factors of what people deem "acceptable" or tasks that everyone should be able to do. Usually things like dressing oneself, feeding oneself, living independently. It's all relative and very similar the concept of "success." Success to one person might mean a large screen TV in a large house, with multiple fancy cars. Success to someone else might be a lifetime of nomadic travel with few possessions. Success to another might be a high school diploma and a job they are passionate about. Success to yet another may be staying home raising children.

I believe the concepts of both success and functioning should be up to the individual. If the person is happy, that's what matters. If being alive and sharing their presence with others is good for them, then so be it. Whether or not you can use the toilet independently has nothing to do with your level of intelligence. Whether or not you can speak, should have nothing to do with the work you can earn a living at, the art you can create or the volunteer time you can commit to helping others.

Let's take a look at Stephen Hawking, for example. He has a brilliant mind. He needs help to eat. He cannot walk. He can no longer speak. In fact, he needs assistance for all of his every day tasks. Despite this, he claims to be happy and is still publishing books. If you were to put a functioning label on his every day capability to complete even mundane tasks, it would be "low." If you put a functioning label on his book writing abilities and the insight he shares with the world, it would be "high." So how should this label be applied if it is to be applied fairly?

Or take a look at this study claiming even so-called "high functioning" Autistic people still struggle with life as an adult. Does high-functioning equal happy? Does it equal productive? What does it really mean?

What about people with MS? Some days they wake up with a good amount of energy to get through the day and a clear mind. Other days they wake up totally blind or with paralysis. Which label applies to them and when?

If high-functioning means I can feed myself, dress myself and use a toilet, is that all there is to life? If a person was considered "normal" and their functioning is reduced due to an accident or illness, is their life less worthy? Or of less value? Are their thoughts suddenly discounted?

As your grandparents aged and their bodies became unreliable, did you love them any less? Did what they have to say become useless? Were they just a waste of space?

There are people who are "high-functioning" - they can hold a conversation, use the toilet, feed themselves and such, but they are in prison for murder, and thus, not contributing to society. Does a function label really matter?

I've left a lot of open-ended questions so people can answer them for themselves. I won't be using functioning labels, however. Not for me, not for my son or anyone else. There have been episodes in my life where I was truly low-functioning. It's important to remember that functioning can change over time, and even from day to day and minute to minute. Functioning is not the be-all and end-all of life. There's so much more to life than just functioning.