Autism Awareness – A Story About Autism Disclosure

The month of April has been tagged as Autism Awareness Month. I remember the days when few people knew what autism was. Now it’s different. More people hear about it. When I talk with people about my professional connection with ASD, I frequently hear that they know about someone on the spectrum or they have a family member who has a diagnosis.

Here’s an autism awareness story

I met Marianne many years ago at an autism conference. Her daughter Caity, who has autism, was a preschooler. Mom and I have consulted and corresponded over the years about Caity’s needs.

Mom is a brilliant user of visual strategies and she has been masterful at incorporating them into Caity’s life and learning opportunities. Caity is now in college and visual tools are still an important part of her success.
Mom contacted me recently to share Caity’s recent experience related to Autism Awareness Month. Here’s what Mom shared.

Caity is now a senior hoping to graduate in the next couple of months. She is busy working on her senior research project taking 4 classes for 16 credits, working at her work study job, writing a weekly story for an online college magazine and she is working at an internship related to her major, Communication with a Minor in Marketing. She is a very busy young woman.

I was quite startled the other day. My phone rang and it was Caity. She sounded very down and upset. She told me she had decided to write an article on having autism for autism awareness month for the online college magazine. She was afraid though that someone at her internship might see the article so she had decided to tell her immediate supervisor and the general manager. She said the manager was rather surprised and thanked her and said she would have not known. She sent an email to her supervisor.    

Her supervisor asked her to have lunch with him and he began asking her questions about autism such as “What does it mean to have high functioning autism?” and also “Why did she want the marketing job she had applied for ?” and other questions that didn’t sound positive. She felt awful and that is when she called me. My heart sank as I heard her retell the event as she saw it. 

It seems her supervisor has a cousin on the ASD spectrum who does not communicate well and it almost sounded like he was comparing Caity to the cousin.

She tried to tell him her main issue was making sure she understood directions and things of that nature. He told her he could not micro manage her. That did not sound good at all,  but I knew I had to build up her self-esteem the best I could and it was not easy on the phone being so far away. I really wanted to be able to give her a hug. 

I reminded her of her high internship grades so far. I also reminded her of how her supervisor had been the one to suggest she apply for the job in the first place.

Then I began to hear more information coming from her about the conversation. He had asked why she had the interest in marketing, which is the job she would be doing. I realized that can be any employer’s question.  He also said she had done a good job so far and that he would have never known she had autism if she hadn’t told him. 

I thought perhaps he was curious about autism, maybe to help his cousin. I also told her if she thought he was comparing her with his cousin, to remind him no two people with autism are alike. They may have similar characteristics but that’s all. It’s the same as no two people are alike, but for the most part we all have similar characteristics. It’s an important point to make, I think, in disclosure. 

The most important point I tried to make to Caity was that autism does not define who she is. She is a part of our wonderful family. She has her grandfather’s beautiful smile, her grandmother’s love of writing and the physical appearance of her sister as well as some habits of her mom, like sleeping in. She also has a direct way of getting to the point like her grandfather did, “without a filter” as her friends tell her. She is a delightful mix of both sides of our family, just as her brother and sister are, and she needs to be proud of who she is. I reminded her of that. 

I suggested she go back into work and to just keep being Caity and doing the best job she knows how and if she gets the job it’s meant to be. I told her too, that if she doesn’t get the job, there is just another plan in store for her.

We discussed whether she should ask her supervisor if he had any issues with her working there but to wait on that and see if he started treating her any differently.

I received a text from Caity telling me all went well at work. He treated her the same as usual and at the end of the day my “direct to the point I want to know now” daughter asked him if he had any concerns about her disability. She said, “He said no, he was just curious.”  

 All is well and that huge step of disclosure in this situation is over. Caity made the decision on her own to disclose and I believe it was the right one. It’s such a huge step in her believing in herself and moving forward. 

Food for thought

Marianne is a wise mom and I appreciate how she shares some of her experiences with others. Disclosure is one piece of the autism puzzle that doesn’t have a simple answer. Just like no two people on the spectrum are alike, there is not just one answer to the disclosure question.
Do you tell people?  If so, when?  How? What do you say? How do you describe it? What is important to reveal? And perhaps most important, what do you have the right to keep private? Each family and each individual will have different answers to these questions.
Autism Awareness
Caity’s experience in this story demonstrates something very important. She is a capable young woman who understands herself quite well. Yet, in this event, she benefited from her conversations with Mom to understand some of the subtle social aspects of her situation and interactions.
Caity has great confidence to reveal her autism. She is learning how to represent herself to others. Mom is learning how to support her daughter “just the right amount.”
I look forward to hearing the next chapters in Caity’s journey.

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