I hate the terms ‘high’ and ‘low’ functioning.
I don’t know how else to describe the spectrum differences.
So, I’m sorry –
I’m sorry that I have ever said those words.
I’m sorry (in advance) for the times I will say those words in the future.
I’m sorry that those words seem to be the ‘go-to’ in describing the complexity of the spectrum.
Through writing this blog I have met and heard stories of so many. So many like us and so many so different from us (whew…that is A LOT of ‘so’s in one sentence). If you didn’t have a chance to read about seven really amazing (and amazingly different) children on the spectrum check them out…
Day #154 – A Celebration of the Spectrum: Meet Brandon
Day #155 – A Celebration of the Spectrum: Meet Isaac and Noah
Day #156 – A Celebration of the Spectrum: Meet Carter
Day #157 – A Celebration of the Spectrum: Meet Garrett
Day #158 – A Celebration of the Spectrum: Meet Kathy
Day #159 – A Celebration of the Spectrum: Meet Michael
Maybe it’s being a good Lutheran…the guilt that I have. The guilt that I hold onto. All of the guilt of how ‘typical’ Tucker can be.
- Tucker talks…a lot. So, when I hear stories about children who have autism that are nonverbal, I’m sad.
- Tucker goes to school. So, when I hear stories about children who can’t go to school, I’m sad.
- Tucker has friends. So, when I hear stories about children who feel so alone and isolated, I’m sad.
- Tucker sleeps. So, when I hear stories about children who are awake for hours, I’m sad.
Then…I remember that we have our own challenges. It’s not so ‘obvious’ that Tucker has autism.
- Which makes it much more difficult when there is a meltdown.
- Which makes everything about school a bit more challenging.
- Which makes leaving social situations more troublesome
- Which makes it more difficult to explain…just about everything.
The thing is this – I know for some in the ‘autism community’ there is a division between the functioning level of our loved ones (ugh…see…there it is again!). I don’t like this, I don’t like it one bit – I don’t even like the way that sentence sounds. I once read a fellow blogger’s site where he wrote something along the lines of, “Oh…your kid is on the spectrum. I know what that means. That’s not real autism.”
It is real autism. It’s different from your experience, but it’s still very real.
Tucker is sometimes ‘higher-functioning.’ He talks…although much of his talking is scripting…so does that still count?
Tucker is sometimes ‘lower-functioning.’ He cannot focus in sensory rich environments…although if given supports he does fine…so does that still count?
The confusion exists and persists. One of my favorite quotes about this comes from Laura Tisoncik. She wrote, ‘The difference between high functioning autism and low functioning is that high functioning means your deficits are ignored, and low functioning means your assets are ignored.’ (http://www.autismmind.com/Blog_Entry_srk/Eliminate_Labels_High_Functioning___Low_Functioning_bek/)
We must, as a community of people who have autism or love someone with autism, come together and reconcile those differences. We all have a story to tell, we all need to show AND experience love, compassion, and understanding. This coming together must begin with listening and non-judgement of who has it ‘worse’ or ‘better.’
Your story and experience is important to our collective story.
United we conquer, divided we fall.