Can you explain why you refer to individuals on the autism spectrum as fellow ‘Autists’? I really like the use of this word, as for me, it conjures up a positive image, something that is different but not less.
Ellen. I use the word “fellow-autists” to express our connection, our bond. It feels safe to be with fellow-autists.
When you approached the people on the forum about contributing to your book, what was the overall initial response?
Ellen. The most active members on the forum were very willing to help with the book. For some it was the first time ever describing their autism to others. There were lively discussions on most of the subjects. Every time I added a letter and a concrete question with it. For example, C and Changes. How do changes affect your daily life? The members were very enthusiastic and involved and this stayed on until the end, reaching Z.
Are you a regular member of the forum? Do you like to use social media to chat to fellow autists?
Ellen. Absolutely. There is not a day that I skip looking at the forum and I try to react and respond to the other members. I am one of the founders and still one of the moderators.
I used to be active on a lot of social media, but the enormous load of information does get me agitated at times. Since my book is out, I get high numbers of requests to become Facebook friends with people. I find it hard to deal with that. Some I accept, but not everyone. I am overwhelmed with the attention.
I try to limit myself only to my forum and not too much other social media, because the overload of information is too much to cope with for me.
I like how you write about your teaching days and that you felt comfortable with children, as they are honest. How many years did you teach? Did you feel a sense of belonging at school? Do you miss teaching?
Ellen. I was a teacher for almost 10 years. When I had to quit the job because of my Tourette and Autism, it took a long time before I got my life back on track. It felt like a sort of bereavement, having to give up teaching. Luckily I found a new goal to go for. I am working with Alzheimer patients in special nursing homes and it’s the best job I have ever had! Because of this I do not miss teaching anymore.
I also realized that working in education is simply too hard for me. Combined with my autism it was in every aspect more than I could actually do.
But recently I started helping a 15-year-old high-school student once a week for a couple of hours, and I really enjoy this!
Thank you for explaining about the difficulties with change, in your chapter ‘Change’, I never truly realised how mentally exhausting change can be. Did you feel that this was an important chapter to write and explain these difficulties to Nerotypical’s (NT)?
Ellen. Yes, it is one of the most important chapters of the book. It is something that you can’t see looking at my face, because the stress that I have to cope with when dealing with changes, is mainly in my head. That is the hard side of ASS. It is all in your head. Invisible stress for NT’s. Change means: switching.
For example: someone comes too early or too late at an appointment. When he or she is too early I get stressed because I might not be able to finish what I was doing. When someone is too late I get stress not knowing when he or she will show up. I have learned to cope with changes, but unfortunately changes usually come very unexpected.