Last week my, children and I attended a traumatic brain injury symposium. I attended for work purposes, but it ended up resulting in so much more. If you have read my previous blogs, you would know that both my children and well as myself are autistic. My daughter also has bipolar, more specifically, Juvenile or Early-onset Bipolar Disorder. She was officially diagnosed when she was eight years old, two years before her Autism was officially diagnosed. In hindsight, her autism was obvious from the very beginning, she was even tested twice for Autism as a toddler, but her bipolar symptoms seem to over shadow her autistic traits. Once she started medications to treat Bipolar, her autistic traits became more apparent. This eventually led to her receiving an official diagnosis for Autism.
My daughter’s autism diagnosis changed after the DSM-V came out in 2013. She originally was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). After a re-evaluation, her diagnosis became Autism Level 2 with accompanying language impairment. The changes in the DSM-V allowed my daughter to get a much more precise diagnosis allowing her care team to develop a more appropriate care plan.
My daughter is now 17 years old. She has attended two Autistics Present Symposiums, and now a traumatic brain injury (TBI) symposium. My daughter does not have a traumatic brain injury, but she discovered that she felt more at home with the people who attended the TBI symposium than she did at the Autistics Present Symposiums.
When I asked her why, she had a very eye opening answer. What she discovered at the TBI symposium is the people there carried a lot of anger with them. They are angry about their situation, they are angry about how other people treat them, and some of the people also spoke about their fear of their condition, their temper, and their struggle to adjust and conform to societal expectations. The TBI symposium also addressed ableism. My daughter told me that she encounters ableism every day. She doesn’t say anything, because she is using so much energy not to get angry. She is so worried about losing control. She is at war with herself all the time trying to keep her from being pulled apart by everything she is experiencing internally and externally. She has nothing left to self-advocate about the ableism she is encountering.
My daughter told me that she feels people treat autistic people in a softer, gentler way. People are more accepting of an autistic person than a person who has bipolar. There is so much negatively surrounding bipolar. She hears people with bipolar are awful, unkind, and cruel people that hurt other people. My daughter hears it in the media, in school, and out in the community. Compounding the problem were the voices she would hear in her head telling her she was bad and even instructing her on how to hurt herself with knives and fire. Luckily, she has not heard those voices in two years, but she still hears the negativity by real people.
She feels safer saying she is autistic than telling anyone that she also has bipolar. It takes a special kind of environment where she feels safe enough to disclose about her bipolar. She felt more at home with people who have experienced traumatic brain injury, because she understood what they were talking about. She understood their anger and frustration. She understood the ableism they face and the impatience of people who do not understand the situation. I am not saying autistic people don’t face ableism. They do, a lot. I think what my daughter was trying to explain was that autistic people might be treated with more understanding, but for a person who has a serious lifelong mental illness, that same understanding is not there.
My daughter’s autism and her bipolar are tightly wound together. Each impacts the other. How she experiences the world is a result of how her bipolar and Autism interact. Society as a whole is telling her that part of her is tolerable and part of her is bad.
I asked my son, who is 15 years old, what he sees when it comes to the difference between how autistic people are treated versus how people with mental illness are treated. He told me that he thinks autistic people are treated with more contempt and he gave the examples of ABA, “cure”-based thinking, eugenics versus super human perceptions/intelligence like the new Sherlock Holmes. He then said people with mental illness are treated with more fear. He feels people fear those who have mental illness.
According to NAMI:
- Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year.
- Approximately 1 in 25 adults in the U.S.—9.8 million, or 4.0%—experiences a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
- Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
- 1% of adults in the U.S. live with schizophrenia.
- 6% of adults in the U.S. live with bipolar disorder.
- 9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
- 1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
- Among the 20.2 million adults in the U.S. who experienced a substance use disorder, 50.5%—10.2 million adults—had a co-occurring mental illness.
“NAMI condemns all acts of stigma and discrimination directed against people living with mental illness, whether by intent, ignorance, or insensitivity. Epithets, nicknames, jokes, advertisements, and slurs that refer to individuals with mental illness in a stigmatizing way are cruel. NAMI considers acts of stigma to be discrimination. Stigma reflects prejudice, dehumanizes people with mental illness, trivializes their legitimate concerns, and is a significant barrier to effective delivery of mental health services. Because of stigma, individuals and families are often afraid to seek help; health care providers are often poorly-trained to refer people to mental health professionals and/or mental health practitioners, and services are too often inadequately funded.” (Stigma And Discrimination)
Ableism is considered the intentional or unintentional discrimination or oppression of individuals with disabilities. Ableism falls right in with racism, sexism, ageism, and classism. People can be ableist without even realizing it. Ableism can exist in many forms. Here are some examples:
If you have a child who has been labeled a behavior student in school, ask yourself, “Is ableism in the classroom a possible trigger for your child’s behavior?”
If you are experiencing anger in the work place, ask yourself, “Are you experiencing ableism where you work?”
My daughter wanted to add a quote to the end of the blog:
“Spread the facts about mental illness, not the bias!”