Day #204 – Spectrum Apologies

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.

autism-spectrum-conditions

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.”

Ugh.

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.

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9 thoughts on “Day #204 – Spectrum Apologies

  1. Thank you for writing this. I’m not sure where on the spectrum my daughter falls. She just turned 4 and is the sweetest little girl. She doesn’t have any negative behavior issues. Maybe because she doesn’t have any sensory issues. Most of her communication is echolaic, but she is going to ABA and its improving every day. She stims a lot, which is the only flag she has that something is different about her. She sleeps beautifully! We put her to bed at 7:30 and never hear a peep. Even in the morning, she will just quietly wait for us to come get her. She is our easiest child. That being said, I am heartbroken. I have wanted a daughter my whole life. I decided on her name when I was 5 years old. Everything I have done in my life, I have imagined doing with my daughter someday. We had 2 boys and my husband didn’t want anymore children. We were discussing it all the time and then, oops. It was a girl!! I was so happy! My life and family was complete. She was perfect and hit every milestone. Then at 2 1/2, she started flapping her hands and regressing vocally. She stopped talking almost completely. My world shattered. Even before her diagnoses, I did everything I could and got her as much help as I can. But inside, I am dying. I’m mourning the loss of the daughter I thought I was going to have. I went to a support group for a little while, but I felt guilty being sad. Their children were so much “worse”. They had other problems as well, and most were a miracle to be alive. I stopped going because it made me feel like a horrible person. I don’t have anyone to talk to. I feel like nobody understands what I am going through having a “higher” functioning autistic child. It’s still heartbreaking!

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    • Laura,

      My thoughts are with you. Know that these things can still happen with your daughter…it may be different, but the supports that are available now are amazing. Still – grieve…because it’s not what we expected. You will find as she grows that it’s not as expected…but sometimes better. She will teach you so much about yourself and life…her small strides will bring you great joy. Evenso…cry. It’s okay. I hope my words can help you find comfort and feel free to reach out whenever you can/want. Much love from one mama to another…just keep on loving her through it 😀 ❤

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  2. I dislike “high” and “low” and “functioning” too. We need better words. These are demeaning. They are mechanical. They remove the person entirely and they don’t MEAN anything. I am “low functioning” before my morning coffee. I am “high functioning” when I am responding to a crisis. The rest of the time I am just with the flow. Grooving. I don’t know what the answer is, but I suspect in a few years time calling someone “—functioning” will be an insult. As a community we can do better.

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    • YES!!!! Thank you, thank you, thank you – I am also high and low functioning…depending on my sleep and caffeine intake. I’m certainly not trying to make light of this – but we all have challenges and I think either label is demeaning…maybe through this blog we can coin some new ‘terms!’

      Liked by 1 person

  3. Thank you for sharing. I agree with the concerns you share over the terminology. Historically terms identifying people with cognitive impairments used to be called mentally disabled, mentally retarded. Before those terms they were identified as feebleminded, idiots (individuals who appeared with a lesser impairment were referred to as imbeciles), and moron. These terms sound particularly harsh, because they are, but they originally came from using these words to identify people with cognitive or mental impairments.
    I struggle with using Asperger’s, ASD or High-Functioning Autism to describe my daughter. I am okay using any of these terms because I know it should help paint a picture for how to best help my little girl- she is 6. I get caught up though, making the assumption that other people know as much as I do about these struggles. Often when I shared one of these terms to describe my daughter, most people outside her inner circle of comfort are shocked. They will usually respond with “Really?” or “She isn’t autistic!” I understand the confusion they share and try not to get frustrated with this because my daughter has some great coping skills and uses her strengths to hide her weaknesses. This takes a lot of effort to do every day and that is why the moment she gets in my car after school, she can finally relax and shuts down. I recently read an article that described these “higher-functioning” individuals with autism as brilliantly disabled.
    I love the phrase “brilliantly disabled” because, for me, it captures her huge strengths and her challenges that might be covered up.

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    • No kidding, right!?!?! I’m blogging ‘Autism Purgatory’ very soon…not quite ‘bad’ enough and not quite ‘good’ enough. Thank you for your comments and sharing – I’d love to hear more about your daughter!

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  4. Pingback: Day #225 – The Trouble With Taffy | 366 Days of Autism

  5. Pingback: Day #327 – Indexing | 366 Days of Autism

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