Product description reads as:
‘In I Am Not Strange, I Have Autism, author Ellen van Gelder gives a clear insight in the life of someone with an Autism Spectrum Disorder. She does this in 26 chapters, arranged from A to Z. Along with her own side of the story, she also includes stories of her ‘fellow autists’, who give their take on life with autism.
With these practical insights, I Am Not Strange, I Have Autism is an inspiring book for people with ASD who are looking for more balance in their lives, but also for partners, caregivers, family members, or others who want to learn more about an ASD. It gives a nice and clear insight in the being-different of ASD.’
Ellen is from The Netherlands and so therefore the book was originally published in Dutch. However, this version loses none of its meaning in its translation. The book gives you an A – Z of Autism which I love. We hear from Ellen herself in her honest and frank writings about living with both diagnosed and undiagnosed autism. Ellen is a trained teacher and taught for many years in both a full time and part time role. She no longer teaches but volunteers at a care facility where she looks after elderly residents with dementia, and through her writing you can clearly tell that she loves her work there.
I was lucky enough to be able to read this book and as a parent of child with ASD, I relished the opportunity to do so. I like to read about other parents experiences, as I can often empathise with these parents’ as well as learning some valuable life lessons along the way. However, ultimately, what I find most useful is reading books such as these, were an individual who has autism shares their life experiences and what it is truly like to live with autism from the inside.
Ellen lays herself bare in this book I feel, along with the many contributors from a forum for individuals with ASD, which offer a great insight of how it is for the individual, something that I will never truly and fully understand. These individuals within Ellen’s book are referred to as fellow Autists, (this I love).
After reading the book, I contacted Ellen in order to ask her some questions about her fascinating book. My interview with Ellen can be read next.
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.
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.
Ellen. Nice to ask this question! At first I didn’t exactly know how to add Tourette to my book, but it does play a major role in my life. I have had Tourette since I was 7 years old. It became worse all the time. I had multiple physical and vocal tics, especially the motor tics gave me a hard time. I was bullied a lot at high school and it forced me to constantly try to keep my tics under control, a sheer impossible task.
When I was 41 I had a brain operation were they placed electrodes on some parts of my brain. These are connected to a small transmitter that is placed under my skin in my chest, which sends small electric signals. These signals cause a partly break of activity of those parts of my brain that cause my tics.
I was in hospital for three weeks and it was a hell of a job to adjust the transmitter to send the correct amount of signals to my brain. But, it really helped me. I still have the tics, however they are much weaker than before the operation.
You describe in your book how you were bullied as a child during your secondary school years, and this is still very true today for our young people on the spectrum. Did you tell any family members about this and did you think it was your fault? What advice would you give to any child or young person being bullied today?
Ellen. I was very introverted as a kid and a teenager. I didn’t dare to talk to other people about my situation and I became very lonely. I was bullied because of my tics and other kids imitated them, laughed at me. Later I found out that they used my tics to bully me because they didn’t like me due to my autistic behavior. I used to ask lots of questions in classes and was therefore always prominent.
This changed when I was about 17. I went to the local vicar, a young man in his early thirties, who was very understanding. He taught me to talk about myself and my behavior. He also spoke to my parents.
My advice to kids who are bullied is: find someone you can trust. A teacher or someone else. If you don’t dare to talk then write down what is bothering you and give it to this person. And remember: it is never your fault! No one asks to be bullied.
In your chapter Xeno, you describe how individuals on the spectrum are often seen as strangers as they behave differently and can scare people away. Do you prefer to be alone?
Ellen. The older I get, the more I like to be alone. For me it means less stress, doing things the way I want, no need for communication and time to relax. But sometimes I like to have other people around me. My social network is luckily big enough, there is always someone I can call or go to if I need it. And I have my work in the nursing home.
Ellen. My dog is my everything. My big girlfriend, as I call her. I got her from a pet asylum, she is originally a stray dog from Spain. Because of her I have to go outside every day, that gives me my daily structure. It is proven that people with pets are less depressive than those without. I believe that too. My dog and cat are always friendly to me and they like to be cuddled. It works like therapy for me.
Finally, has writing your memoirs been a cathartic process for you? Was your aim to help fellow autists by telling your story? On a personal level I think that NT’s will gain wonderful insight into the world of autism by reading your book.
Ellen. It is my goal to give people with autism recognition. That is very important in the process of accepting. To read that you are not strange, merely having some form of autism, can be quite a relief for fellow-autists.
The other goal is to teach NT’s about people like me. To give an insight in daily life of people on the spectrum and hopefully have some more understanding for people like us.
But if my book can create more awareness on the fact that information processing works differently with people on the spectrum, that would be a great achievement!
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What I particularly liked about this book was the message that we are all different and that we should all try to embrace those differences and get along with each other, both autist and Neurotypical. No matter where we lie on the spectrum, if at all, we are all different and does this matter? I think not.
I’m Not Strange. I have Autism by Ellen Van Gelder is available to buy from Amazon. In both paperback and ebook versions.