“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.
It must be extra tough on her when everyone has to try to be flexible to meet Declan’s needs. What a wonderful, challenging, awesome family you’ve got.
Thank you so much!
The question you posed is very pertinent- what does people see? A child misbehaving or child struggling to handle her challenges? It’s always easy to look at her and dismiss her as a misbehaving child because the society we live in have grown quite insensitive to the challenges around us. We need to learn to look a bit further before we come to hasty conclusions.
I have a friend who has twin boys. One of the boys is autistic and the other is not. It’s been a challenging time for her because she never knew anything about autism before then. Initially the community around us was not very understanding and sensitive because she didn’t make us understand what was happening. So people made quite insensitive comments about her son. I noticed the boy’s behaviour and took note because I’ve been working with autistic people for over 5yrs now. I probed further and she opened up. From then on, my attitude changed because I knew her story.
I really applaud what you do here because we need to keep educating our society that these challenges exist, and parents with autistic children need every support they can get. May God give you strength and grace as you keep loving them as best as you can. 💝💝
Thank you! I feel for your friend. I think it is great that you reached out to her. Autism can be very isolating. I must stay right next to my kids, I can’t go and talk to others about what my kids are doing and then if I could leave my kids to go explain – what would I say? I love it when a friend comes to my world, to walk with me as I follow my kids at a playground or at a pool. Yes, I want to talk about it, but not everyone wants to listen. And you’re right – people are so more supportive and sensitive when they know what is going on.
Thank you! The blog has helped me raise a voice to advocate for autism. To share our story and help provide information about the spectrum. To hopefully be a resource or a place for others to come and support one another and share our stories. Thank you so much!
You’re welcome. I’ll send your link to my friend. She’s not on WordPress but hopefully she will be blessed like I am. I wish every of God’s abundant grace💝💝
Here might be a solution for your daughter in the future. Could go get the snack, then stay in the shallow area after finishing it? As a former life guard, as long as kids stay where they can safely stand up in the water, they will be fine. Problems come from horse play in the water.
I hate changes in plans, too! Especially if it involves changes in a plan I am looking forwards to being involved with. Refusal to go is my normal solution! Pisses my husband off, but he is slowly getting used to the facts.
Yeah, it’s hard finding another sloution for her. It’s like you said – when you have something planned, it’s hard to accept change.
I see so many children these days, who appear to be autistic. Why is it happening more in this generation than it did in the past? Some theories are blaming the vaccinations at such an early age or the number of vaccines given at the same time. Others blame the toxins from binders in the vaccines.
However, we must admit that high-end perfectionists have a hard time with random folk. There are so many things that affect the moods. If only we had all the answers…
Yes, there are a lot of different theories out there, from vaccinations, to GMO foods, to brain development – in short, scientists are looking at a lot of different genetic and environmental factors that are causing the rise in autism rates. Other theories say that the rates have always been this high, we just have not had as much awareness about the disorder before as we do now.
I must admit that I love your blog. There are so many misconceptions about autism and your blog is one of the best ways to change people’s view. Lots of love ❤️
That’s wonderful! Thank you so much!
There is no way of consoling them when something alters, and they have their routine.
Thank you for this!
High functioning autism has different challenges than a low function child, non the less it does not stop it from also being challenging and hard.
Sometimes I feel so bad for my kids as they are on the higher functioning level – and you can’t “see” autism. So much is expected of them at face value but they have to work really hard to maintain what is expected of them. Very challenging! Glad you connected with the post!
Thank you so much! My middle son is high functioning as well. I do think people often overlook the challenges associated with high functioning because they cannot “see” the challenges. This is a wonderful article. Thank you for helping to bring awareness AND education to those that do not know.
I’m so glad you found this! So challenging yet so invisible. It’s tough!