What “the spectrum” means
When my brother was about eight or nine years old, he was diagnosed with attention deficit hyperactivity disorder, or ADHD. We were not surprised. He’d been impulsive and extremely “busy” since he was born. But the diagnosis gave us nothing more than a label for what we already knew to be true. Oh – and some personality-draining pills. In an effort to appease his teachers, my brother took his pills faithfully for some time. However, the effect they had on his emotions, personality and creativity were too great, and finally he and my parents called time on the drugs, choosing instead a series of expulsions as he wended his way through academia. Needless to say, despite an incredible IQ and masses of “potential”, he barely scraped through high school. And he hated it. As I watched, I vowed to avoid the same scenario for my children.
A tentative diagnosis
At first, we didn’t realise that we had any “special needs” in our family. Both girls are beautiful, bright and healthy. They excel at anything they set their formidable minds to. But that’s just the thing. They don’t set their minds to everything. Goldilocks, in particular, can be very focused and effective working on activities that interest her. But if an activity doesn’t engage her, getting her to participate in it is no straight forward affair. You’d have more success milking a male mountain lion. Her teachers noticed that “something was up” before we did. What we identified as Goldilocks’ unique awesomeness, they identified as a learning disability. We were sent to speech therapists, occupational therapists, educational psychologists and paediatricians. In the end, the “experts” diplomatically told us that we were both right. Yes, she’s highly gifted. Yes, she has ADD. Here are some pills. Have fun. I fought tooth and nail against the party line for years. I refused to give my child Ritalin until the teachers refused to teach her if I didn’t. Even then, I took my laundry list of concerns into the doctor’s office with me.
- What if her personality changed?
- What if she lost her specialness?
- What if her tics got worse?
- What if? What if? What if?
My fears were well-grounded, and all of them turned out to be completely valid. Having read the material obsessively, I knew the side effects of that little white Teachers’ Aid. I have had tics all my life, and while I could easily dismiss my own (aren’t I a grown adult, after all?), I certainly didn’t wish the same on my child. She had enough on her plate as it was. The pill took effect devastatingly fast. School was no longer challenging in any way, and the teachers were delighted at the turn around. Poor little Goldilocks, however, lost her spark. She became withdrawn and depressed. She lost her appetite and a noticeable amount of weight. She began to express the wish that she’d never been born. It was then, when I identified suicidal ideation in my eight-year-old, that I stopped the treatment. We removed gluten from her diet and started her on a strong course of excellent Omega 3s. The teachers didn’t notice, and within a few months I began to see a glimmer of my little girl starting to resurface. The tics, however, got progressively worse. The paediatrician and a GP both flippantly acknowledged, “Oh yes, that’s Tourette’s”, and offered no further assistance of any kind.
I trusted them not one jot and set off to find solutions myself. First things first, we investigated the link between migraines (which both Goldilocks and I are victim to), epilepsy (which my mom had in her childhood), ADD and Tourette’s Syndrome. That research led us to the link between these conditions and both Aspergers and Autism. Even then, I was reluctant to accept any labels. For one thing, I didn’t want my daughter in a “box”, so to speak. And for another thing, it seemed a little like Munchausen Syndrome by Proxy as I kept digging into what afflicted my little girl, trying to identify it. My research (and some good friends) led me to the blog of Tania Ann Marshall, a research pioneer on autism in women. Here I found lists of symptoms describing what Autism is and how it presents in girls. Because girls are not like boys, and their syndrome experiences are different, as well. I watched videos by thought leaders and research pioneers on the subject.
Symptoms of Aspergers in Girls and Women
Today I’ll end here, with a list of symptoms that all match my Goldilocks. Next time, I’ll go into some coping strategies for helping your autism-spectrum child be the best they can possibly be.
This list is taken from Tania Ann Marshall’s website, where she explains:
This profile was created for females who are self-diagnosing or considering formal diagnosis and to assist mental health professionals in recognizing Asperger Syndrome in adult females.
- Cognitive/Intellectual Abilities – girls with Aspergers tend to have above-average intelligence.
- Education/University Life – girls with Aspergers tend to have eratic performance at university and higher education institutions. Despite high marks, they have a tendency not to complete their studies.
- Career/Work – these girls are very often drawn to careers in the arts (writing, painting/drawing, acting or music) or careers working with animals. They tend to work to become experts in their chosen fields, thanks to their obsessive focus on things that interest them. Social interactions tend to be fraught.
- Social and friendships/relationships – “Aspien Girls” tend to battle to understand social interaction, and use “social echolalia” (copying the interactions of others) to mimic social graces.
- Communication – she can find it difficult to express herself, especially under stress. Usually writing her feelings down makes it easier for her to be clear and calm.
- Physiology/Neurology – a woman or girl with Aspergers will tend to be highly sensitive emotionally. She will be easily upset if her environment is disturbing (too loud, messy, bright, dull etc). She may need to withdraw at times to recharge. She may have OCD, ADD or Irlen Syndrome, and may grind her teeth. She will probably battle with being organised, and is highly inclined to have wheat, gluten, grain, dairy and casein allergies. She may have tics.
- Physical Appearance – her dress sense will be unique. She is either very unlikely to conform to social norms, or ultra-conformative to the point of obsession. There is also anecdotal evidence of a link between girls with Aspergers and anorexia.
- Lifestyle – the Aspergers girl seeks peace. She prefers not to work with other adults, selecting children, books, computers, or nature instead. She tends to be obsessive about her area of interest. She requires routine and works hard to “automate” tasks to simplify her life.
- Relationship Choices/Sexuality/Gender – girls with Aspergers tend to date much older men, or to adopt a same-sex orientation.
There are more on the list but they are covered for the most part by topics mentioned here.