I received a question yesterday from a young adult who mentioned writing to me in 2009. I checked my database and found his old question. I’ve included his original question with his recent comment. I hope children today will experience less torment than he did; we adults must make it so.
Original question: I am 19 and have Asperger’s syndrome and Tourette’s syndrome. I was homeschooled because teachers expected me to change what I am and kids were just plain cruel. I don’t know how to text and I don’t care about Facebook or My Space. I go to the mall when I want to buy something. I play video games, but I love going fishing, walking in the woods, bird watching and raising exotic pets better. I would like to make friends with people who can accept me and enjoy life without texting and IM. My mom says kids like that are out there, but I don’t think so and I get very depressed.
Recent comment: I wrote to you 10 years ago. I was lonely and miserable. I’m writing now to ask you to please print this because my life is so much better than I ever thought it would be. I’m married to a great person. I have a job I love. I no longer feel isolated. I want kids like me to know life gets better. It really does. When you answered my question a decade ago you explained my disabilities very well. Could you also reprint your response from then? Thank you for being here and answering questions without judgment. Thank you for assuring me that I am worthy.
Mary Jo’s current response: It’s my pleasure to do as you ask. It’s also wonderful to hear from you. I’m thrilled you’re happy. Here is my response from 10 years ago, as requested. Thank you for inspiring other young people by your words.
One note: I’m sure you know an important change in diagnosis occurred in 2013, when Asperger syndrome or Asperger’s became part of a one umbrella diagnosis of autism spectrum disorder (ASD) in the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5). The change simply means the spectrum of autism is wide and many differences exist among individuals.
In 2012, I wrote a manual for teachers on how to include all people in sexuality and relationship education. “Me Too: Real Talk about Sexuality for People of ALL Abilities” is available on Amazon. (The book was written before the #metoo movement). Your healthy relationship affirms my belief that each person has the right to seek a partner.
Mary Jo’s response Jan. 26, 2009: I am impressed by your courage. Thank you for writing. You are a person of worth exactly as you are. I’m sorry other children were cruel to you during your childhood. You deserve friends.
Our peer educators were saddened by your situation and wanted to let you know they respect you. I respect you a great deal. Understanding many people are not informed about the challenges you face in daily life doesn’t take away the pain of feeling isolated, but it may help you realize how little knowledge about both these syndromes exists in society. With your permission, I’d like to use this column to educate our readership about Asperger’s Syndrome (AS) and Tourette’s Syndrome (TS).
Before I do that, please remember each of us is worthy of respect; no one chooses the circumstances of life. The way we react to those circumstances makes us unique and truly human. Your life is full and you have selected activities you enjoy. Texting and social networks like My Space or Facebook aren’t necessary for an enjoyable life. Depression shouldn’t be ignored – talking with a counselor is a good first step to moving away from sadness. I am absolutely certain young people who can accept you as you are exist. I’m hoping this column will inform and educate.
Asperger’s syndrome is also known as AS and is considered an autism spectrum disorder. Dealing with social situations and communication can be two challenging areas for people living with AS. Find friends who accept you as you are; learn and grow by experiencing social events at your own pace. Focus on the activities you enjoy and find people who share your interests.
Tourette’s syndrome (TS or simply Tourette’s) is a neurological disorder defined by multiple motor and vocal tics lasting for more than one year. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.
Jan. 26, 2019, Peer Educator response: Find local groups that are interested in your hobbies. Start with the local community center or library in your town. If these groups don’t work out, try help groups with people who have similar issues. Expand on experiences that will naturally introduce you to other people. By experiencing new things you will meet new people who will like your interests and personality. Be who you are.