“Catelyn, we are going to stay at the pool for an extra 30 minutes today.”
“WHAT?!?!?!?” Catelyn’s hands went out to the side, her eyes went wide and looked around in desperation.
“Our friends just came. I know we were going to go in 10 minutes, but now we can stay for another 30 minutes. You can stay in the water and play, or you can go get a juice slushy or pretzel at the snack stand.”
“WHAT?!?!? I was going to get a snack, because there was only 10 minutes left! I can’t get a snack and then get back in the water!” Hands flail around, “And I can’t stay in the water and then go get a snack!!”
Then the tears and screaming start.
“THIS IS THE WORST DAY EVER!!”
Catelyn loves the pool. Catelyn HATES when her schedule is changed.
The Challenges of High Functioning Autism
I have mentioned before what the biggest challenge we face for Catelyn:
At the pool that day no one looked at Catelyn until she started crying and screaming, “THIS IS THE WORST DAY EVER!!”
What did they see? How did her reaction translate? Did they see a girl who is facing a challenge related to high functioning autism? Or did they see a child with bad behavior?
Today, I came across the article, “Why High-Functioning Autism is so Challenging” by VeryWell. I encourage you to read it.
The article discusses the myth that high-functioning autism is no big deal as people on the high-end of the spectrum do very well. There are references to individuals with HFA, like Bill Gates, Albert Einstein, Darryl Hannah and Dan Akroyd and their success. And although these people have done very well with HFA, they are rare. People with HFA have an IQ typical of their peers and face many different challenges which can prevent them from succeeding in work, a relationship and having a positive self-worth.
The article lists some of the everyday challenges that people with HFA face:
- Extreme Sensory Issues
- Social Cluelessness
- Anxiety or Depression
- Lack of Executive Planning Skills – this is how we organize our lives. How we schedule in advance. For example, a person with HFA may not notice the shampoo is low and will need to buy more
- Compromised Executive Functioning Skills – managing a household or coping with schedule change at school or work
- Emotional Disregulation – a person with HFA can become far too emotional in the wrong setting
- Difficulty with Transitions or Change
- Difficulty following verbal communication
The article gives an example of a 16-year-old who breaks into tears because of a change of plans. Or a grown woman who has a meltdown when her car won’t start. These individuals are very capable people, when their situations are predictable.
These examples as well as the other challenges really resonated with me, as they seemed to be depicting everything I see in Catelyn.
High functioning autism does mean the person is high functioning. But the person still faces many challenges. I see Catelyn face these challenges every day.
Because Catelyn is high functioning, her challenges are easy to overlook or define as challenges. It is much easier for an outsider to look at Catelyn and see “challenging.” But autism is autism. Regardless of where a person is on the spectrum, there are still challenges to be faced.
And we will continue to support Catelyn and help her find ways to work through the challenges she faces. To help her be happy with a very positive sense of self.