1. A significant number of autistics don’t identify with a gender or are transgender or bi-gender. A significant number of male autistics relate to the autistic experience that the majority of female Aspergerians express, particularly, intense and confusing emotions, deep empathy, sense of isolation and awkwardness, not being believed when authentic, and difficulty with conforming to or understanding the societal norms and expectations of a specific gender.
2. Some adults are diagnosed or recognize they are autistic later on in life. For the most part the diagnosis or realization of ASD can bring feelings of comfort and a sense of community. However, finding out you are autistic later in life can also result in mental and emotional distress and confusion, situational depression, further self-isolation, complex and painful introspection, and loss of identity and sense of self. Late-age diagnosed autistics are commonly left searching for answers whilst dodging through all the autism-related misnomers and recirculating falsehoods (lack of empathy, imagination, ability to have relationship) in the media. Many are searching for a home base.
3. Autism spectrum disorder (ASD) is estimated to affect approximately 2.6 million people in the United States. Some experts estimate that for every two diagnosed autistic males there is one undiagnosed autistic female.
4. Professionals generally miss the mark in detecting autism, particularly in females or males that present more liken to the traditional autistic female experience. This oversight can have a great emotional impact on lives and is often associated with misdiagnosis, lack of support, and the all too common shaming accusations.
5. Because autism has overlapping traits with other syndromes and disorders, it’s hard to distinguish one “symptom” from the next. Some have EDS or another connective tissue disorder (joint hypermobility syndrome), seizures, depression and/or mood disorders, PMDD, generalized anxiety, and so forth. Not everyone has all the biological and psychological “symptoms” of various conditions, but most of us seem to have at least a few. It’s difficult to separate aspects of Asperger’s Syndrome (such as IBS and generalized anxiety) from biological conditions (such as connective tissue disorders). It’s also challenging to distinguish what biological and genetic conditions affect the neurological functioning of an individual.
6. Some discomfort and outrage arises in the autism community, when individuals are seen as being in parts and separated into segmented characteristics, instead of viewed as a whole and unique individual person. No one wants to be portrayed as a lab rat or a false stereotype. Not all of us are tech savvy, “geeks,” or scientists. We range in personality, vocational choices, and mental abilities as much as the everyday human. Some of us wonder what’s at the root of autism. Some are tired of the bombardment (of non-autistics’) theories, research, and viewpoints. Some of us live debilitating lives and long for answers and reprieve/relief. And many of us are extremely fed up with others profiteering off of the “whys” of autism.
7. Autism is a lifelong developmental disability. It is a true impairment with frontal lobe discrepancies that affect executive functioning and physiological aspects that affect mobility and perception. One doesn’t outgrow autism or find the right nutritional plan to eliminate autism. In fact, autistic traits can become even more prevalent when faced with adulthood crisis or, for females, “the change.”
8. It has been estimated that at least 75% of autistics are unemployed or underemployed (low wages, job below their education/ability). In the USA no employment or part-time work often directly equates to no medical health insurance. Autistics are not only facing multiple daily challenges but they are also experiencing acute distress caused from financial woes, loss of income, loss of health insurance, and/or bullying at work. PTSD caused from the workplaces is not uncommon. Job interviews and screening processes, which rely on “people skills” and knowing the ends and outs of social norms, are typically not catered to address the autistic population. Workplace colleagues and upper management are generally not aware of the disabled population of autistic workers and how to develop and implement ASD work accommodations.
9. Autistics are the experts about what it is like to be autistic. That’s a no-brainer! Like any minority, we understand the intricate daily challenges of living in a society in which you are not recognized as the “norm.” We can best describe, from firsthand perspectives, our psychological and emotional responses and experiences. There are some things you must live to understand, such as face blindness, object permanence challenges, “autistic inertia,” chronic pain conditions, confusion over unspoken rules and cultural norms, and the deep grief of being ostracized, single-out, and deceived. There exists no one more equipped to describe the experience of having an autistic brain than an autistic. And no amount of schooling and book smarts can make up for a lifetime of everyday, every minute, life with an autistic mind.
10. I will be attending an autism conference in the fall. My job is paying my way. I am fortunate. I have a job and I have the means. In contrast, many autistics cannot afford a book on autism and forget about a $300 to $600 event. While it might be deemed beneficial that autism events and awareness gatherings are becoming more the norm and more accessible, this accessibility is granted mostly for the middle- to upper-financial class. For every one person an event or resource is helping, there are hundreds who are wondering how they can get help, when they don’t have the financial means. Some cannot afford transportation. Some do not drive due to dyslexia, dysgraphia, anxiety, and other ASD comorbidities. Some have extreme anxiety in even making an initial inquiry, such as filling out online conference scholarship forms. An intermingling of actually autistic speakers amongst other well-intentioned non-autistic professionals is a step in the inclusive direction. But overall, the high-price tag of autistic gatherings, while great for those that can attend, oftentimes indirectly leads to low accessibility to the average low-income autistic and perpetuates a sense of somehow lacking and once again being left out.
I am the author of Everyday Aspergers, a book ten years in the making. I am a former school teacher with a Masters in Education and the CEO of myspectrumsuite.com I was diagnosed with Asperger’s Syndrome in my early forties. My partner and middle son are autistic. The opinions expressed in this post are my unique viewpoints based on my unique life experience, interactions with 5k to 10k autistics (lost count) and prolific research. If I used some word or terminology you don’t like or don’t agree with, please inform me in a mature and kind manner. I study and research autism several hours a day and interact with hundreds of autistics and their loved ones daily.
Everyday Aspergers is now on Amazon in most countries! Best Seller in disability categories and top #100 memoir on Amazon USA. Thank you for all your support! You rock!
Here are some other posts I wrote you might take interest in:
Here is a great company that employs autistics ULTRA Testing
This post is brought to you by myspectrumsuite.com