“What’s happening now. Now.”
Meet Anna. Anna is a 34 year old female. She identifies as White and Native American and practices Buddhism. She’s married and employed, and loves the colour purple (I feel ya sister!). Her guilty pleasure is taking bubble baths with essential oils, and her desired super power is the ability to fly.
She can communicate with and read animals!
[and we’re all jealous]
Anna writes the phenomenal blog Anonymously Autistic. She is very proud of her blog because it helps many people. Anna mentions that helping people is quite important to her.
I am particularly excited to be writing this month’s blog post because unlike my friends Katie and John from the previous two posts, I don’t know Anna! I discovered Anna through her blog [which your really do have to check out!] and she was kind enough to help me out with this project. Having read through and subscribed to her blog, I definitely agree that it helps many people. I am proud to say that Anna has taken a major step towards spreading knowledge and awareness of autism!
Anna has been diagnosed with Autism Spectrum Disorder and Social Anxiety Disorder. She works daily to help others with similar struggles and focuses on her personal mantra: What’s happening now. Now.
I am grateful that Anna shared her story with me.
What comes to mind when you hear the word “autism”?
Do you think of young kids? What about Rainman? Maybe you think of savants or non-verbal individuals with amazing talents. Maybe you think of the words “high functioning” or “low functioning”. Perhaps you think of Asperger’s Syndrome. And then maybe you think of Sheldon from The Big Bang Theory or Abed from Community.
Autism Spectrum Disorder (ASD) is fascinating to talk about because there are so many misconceptions and uncertainties surrounding it. There has also been a lot of changes regarding this mental disorder in the past few years that have left people even more confused than previously. As a clinician, one thing I like about ASD is that it’s name makes it readily apparent that mental disorders occur along a spectrum. How one person experiences ASD (and any other mental challenge) is very different from how another person experiences it. And this is very important to keep in mind.
Dr. Stephen Shore articulates this idea beautifully:
“If you’ve met one person with autism, you’ve met one person with autism”
Like ADHD (see last month’s post), Autism Spectrum Disorder is a neurodevelopmental disorder. Neurodevelopmental disorders are a group of disorders that typically begin in childhood and involve developmental deficits leading to impairments in personal, social, academic, and/or occupational life. Due to it’s developmental (childhood) nature, symptoms of ASD have to have been present during early childhood. However, they may not be noticed or impairing until adolescence or even adulthood. Anna says she has been experiencing her ASD her whole life. She always felt different.
Prior to 2013, autism was an umbrella term used to describe five different disorders including: (1) Autism Disorder; (2) Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS); (3) Asperger’s Disorder; (4) Rhett Disorder; and (5) Childhood Disintegrative Disorder (CDD). Now, Rhett Disorder is no longer included as a mental disorder, and the other four disorders are subsumed by the term Autism Spectrum Disorder. Similarly, anyone who had previously been given a diagnosis of autistic disorder, PDD-NOS, or Asperger’s are now diagnosed as having an autism spectrum disorder. However, because this change is relatively new, many people still refer to the previous terms, particularly Asperger’s.
ASD is split into two main determining characteristics: (1) Impairments in both social communication and social interaction; and (2) Restrictive and repetitive behaviours, interests, or activities. Then there are additional criteria that together form the diagnosis of ASD.
Examples of impairment in social communication can range from being completely non-verbal to having difficulties understanding conversational meanings. Individuals with ASD may also have difficulties understanding non-verbal aspects of conversations. For example, a student with ASD may not understand that a teacher’s stare means she wants him to stop doing what he is doing. In terms of social interaction, impairment may include having difficulty relating to same-age peers or engaging in conversational reciprocity (e.g., taking turns in a conversation, attending to what someone else is saying). Individuals with ASD often struggle to form meaningful relationships with peers, but this doesn’t mean that ASD stops people from having any relationships. Individuals with ASD often have very strong relationships with parents, primary caregivers, and other important others in their lives.
As mentioned above, restricted and repetitive behaviours, interests, and activities must be present for an ASD diagnosis to be made. For this criteria to be met, the individual must demonstrate at least two of the following:
- Stereotyped or repetitive motor movements, use of objects, or speech. For example, an individual with ASD may flap their arms repeatedly, flip a toy truck over to spin it’s wheels, line up all toys, or repeat exactly what has just been said to her (psych term: echolalia).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behaviour. Examples of this include extreme distress at even very minor changes, having an over dependence on routine, a need to take the exact same route to work or school every single day, and a need to eat the same food for each meal every day.
- Highly restricted, fixated interests that are abnormal in intensity or focus. An individual with ASD may have a very strong attachment to a particular topic (e.g., cars) or have a preoccupation with unusual objects, such as candy wrappers.
Over or under reactivity to sensory input or unusual interest in sensory aspects of the environment. Many individuals with ASD have adverse responses to sounds or textures, excessively smell or touch objects, and/or have an apparent indifference to pain and temperature.
Additional diagnostic musts include symptoms being present in early childhood, symptoms causing significant impairment in social, occupational or other important functioning, and symptoms not being better explained by an intellectual disability or a global developmental delay.
Anna experiences a lot of symptoms related to her mental health challenges. These symptoms determine the impact her mental health has on her life. She describes that on a good day her ASD and social anxiety negatively influence her a little bit. On a typical day her symptoms negatively influence her a moderate amount. But on a bad day, Anna says she her symptoms cause her a lot of trouble and severely impact how she feels. Anna feels that her symptoms of ASD have been getting in the way a lot during the last two weeks.
Anna’s symptoms include worrying, over/under sleeping, fidgeting, losing focus and concentration, and having an inability to sit still. She gets headaches and has a “foggy brain”. She also gets stomach pain, often feels nauseous, and gets sweaty. It is very common for individuals with ASD to experience depression or anxiety. In Anna’s case this makes perfect sense. Many of her symptoms that she shared with me are related to the social anxiety that she struggles with. In addition to the symptoms Anna experiences, it is also common for individuals with ASD to have an intellectual disorder, a language impairment, and/or motor difficulties (such as clumsiness, odd gait, and walking on tip-toes).
Symptoms of ASD are typically first noticed when children are between 12 and 24 months old. However, symptoms can be seen when children are less than a year old if the impairments are particularly severe or when children are older than two years old if the impairments are more subtle. Onset symptoms include motor or speech delays, or losses in speech or social development gains. The behaviour characteristics of ASD usually become noticeable during childhood. It is important to note that ASD is not a degenerative disorder. This means that children continue to learn and compensate for their struggles throughout their lives. Just because someone has an ASD does not mean he can’t learn or engage in social situations. Nonetheless, only the minority of individuals with an ASD live and work independently. Generally, those with lower impairment are better able to function independently. Yet even these individuals struggle socially and use compensatory strategies. Many find it incredible difficult, stressful, and tiring to keep up a social facade.
The rates of ASD are increasing in North America. Approximately 1% of the population has an ASD. This may not seem like a lot, but it is. Researchers aren’t totally clear on whether the high rates of ASD suggest increased awareness, the expansion of the diagnostic criteria as of 2013, increased research, or a true increase in the disorder. Either way, many individuals are impacted by ASD. Boys are four times as likely as girls to have an ASD. Girls with ASD are more likely than boys with ASD to have also have an intellectual disability. This may suggest that girls without an intellectual disability may go unnoticed.
There are environmental and genetic risk factors for the development of ASD. Environmental risk factors include advanced parental age, low birth weight, and fetal exposure to certain medications (e.g., valproate). Having an ASD in the immediate family is a genetic risk factor. Similarly, in approximately 15% of cases of ASD there is a known genetic mutation. I think it is super important to mention that these are just factors that may contribute to the onset of ASD – having these risk factors does not mean a child will 100% have an ASD.
Anna was able to reach out and receive help for her autism spectrum disorder. She mentions having talked to her family practitioner, a psychologist, family members, and friends. Anna also has a network of people who make her feel good and a pet who has been a source of comfort and support throughout her journey with ASD. Although she has gathered a lot of resources, she notes that it was not easy for her to access psychological services. One of the obstacles Anna faced was finding an adult autism specialist. She told me that these are hard to come by, since people believe autism only impacts children.
Anna is not on any medications for her ASD or social anxiety. She would like to keep it this way, as she does not want to alter her natural brain. Although this is her preference, she mentioned that she did consider medication when her “life was so bad [she] couldn’t work”. Anna compensates for her ASD and feels well informed on the issue because she studies it. She shares her findings with the world on her amazing blog – which you have to go check out.
Like virtually everyone who experiences mental health difficulties, Anna has been stigmatized for her illness. In her words, “people have an idea of Autism and I don’t fit their assumptions so I am doubted.” She is so tired of hearing people say ‘but you don’t look autistic’. To me, this statement doesn’t even make sense. What does someone with autism look like? You’re telling me people think if they were in a crowd they could just pick out the people with ASD? I don’t know what kind of super human powers people have these days, but I certainly can’t do that. I wonder if those people can also pick out those with heart disease or type I diabetes.
Like Katie and John, Anna doesn’t think that she gets the same recognition for her mental health disorders as she would for a physical or ‘medical’ disorder. She says she doesn’t get recognition because people don’t believe she needs help. Similarly, Anna has hidden her ASD from others before “because people won’t believe or understand anyway”. Unfortunately, Anna will probably continue to hide her ASD from certain people until the stigma surrounding mental health is reduced.
It isn’t easy for Anna to talk to others about her struggles with mental health. In her words, “I have a verbal communication disorder so speaking face to face about personal things is hard for me. I don’t explain things well with words out loud.” [But she can sure write about them in her blog!]
Anna’s Final Thoughts
Her biggest challenge is…
Anxiety induced vomiting
Her mental health challenge is…
Anxiety and communication
Her advice to others experiencing similar struggles is…
Try to learn to stay in the present moment [cue her awesome mantra!]
She wants others to know that her mental disorder is…
Invisible. You can’t see it and most people can’t believe there is anything “wrong” with me. I am really struggling but people accuse me of making excuses and being dramatic if I share.
Some myths surrounding ASD are…
Autistic people are mentally slow. Autistic people can’t speak. Autistic people have tics and are always rocking. Autistic people can’t dress nice.
She is particularly grateful for…
My husband. He helps out where I lack. We are a team. I need him.
Anna is proud of herself for taking huge steps towards demystifying mental health and removing the stigma surrounding it!
As always I am incredibly grateful to everyone involved in this year-long endeavour to raise awareness of mental disorders and reduce the stigma surrounding them. I am very thankful that Anna, a virtual stranger, was kind enough to join forces and help me out. In my blog posts I am only able to skim the surface of each mental disorder I write about. Anna is the real expert on ASD. She has dedicated herself to researching and writing about it. This will be the fourth time I direct you to her blog, Anonymously Autistic, but it is an amazing resource if you are looking for more information on ASD, tips, personal experiences and more. It is literally a treasure trove of autism resources.
What do you think so far? Do you have any stories to share regarding mental health, stigma, ASD, or other mental disorders? Comment below, I’d love to hear from you!