For many adults who identify as female, a late or adult autism diagnosis has several benefits. Many newly diagnosed autistic women say their diagnosis brought newfound self-understanding and self-compassion. But their diagnosis did not erase years of damage from living in a world that is hostile towards neurodiversity. Even armed with their newfound knowledge and understanding, many autistic adults continue to struggle in some key ways.
This is what Toronto therapist, Dori Zener, found after working with autistic teens and adults for over 10 years. She outlines a therapeutic approach called INVEST (Identify Needs, Validate, Educate, Strengthen and Thrive) in Advances in Autism.
Here are some issues commonly experienced by newly diagnosed autistic women:
1) Low self-worth
Self-worth is one of the main areas where autistic women continue to struggle. They may have been diagnosed and welcomed into the autism community, but a lifetime of not fitting in has a major impact on how they feel about themselves.
“Their self-worth is eroded from a lifetime of being treated as if who they are and how they behave is odd or intolerable to others. … Many express the mental strain they have experienced from the cumulative effects of living with unsupported needs due to unidentified autism — mental health challenges, issues with self-worth, self-esteem and fatigue.”Dori Zener
Even those who did not experience blatant cruelty or bullying on account of their differences were likely teased, left out of social functions, barred from work or school opportunities, and so on. Since females on the spectrum tend to be hyperaware of these slights, the effects can build up and exacerbate trauma or even lead to trauma disorders over time.
Issues with self-worth can keep the autistic person from getting close to or trusting others. The individual may have developed deeply engrained avoidant behaviours as a way to protect themselves from getting hurt. This is especially true if the autistic person was victimized in the past. (The majority of autistic women have been victimized, often multiple times.)
“Intense empathy and a drive to help others can attract unsafe romantic partners. All-or-nothing thinking can blind autistics from recognizing undesirable and harmful traits [in others].”Dori Zener
While these avoidant behaviours may indeed protect the autistic person, they can also get in the way of forming friendships and can lead to loneliness and social isolation.
2) Ongoing sensory sensitivities
While sensory sensitivity is not included in the DSM-5 criteria for autism diagnosis, it’s well-known that sensory issues are a key feature of autism. Sensory hyperreactivity seems to be especially pronounced in autistic females, so much so that many claim sensory issues are the defining feature of their autism.
Having an autism diagnosis often helps the autistic individual understand their sensory differences and challenges, but more support is often required to help reduce the impact of sensory issues.
“Autistic women seek therapy because they want a greater understanding of their unique autism profile and how they can function in this world without getting confused, overwhelmed and drained. They want to improve their day to day lives by learning strategies to enhance their executive functioning and minimize the impact of sensory bombardment.”Dori Zener
Sensory sensitivities are hardwired in the brain, and therefore cannot be changed. However, there are many changes a person can make to their physical surroundings (at home and at work) to help reduce the constant onslaught to their systems.
Being hyperreactive to sensory stimuli can be incredibly enjoyable. Autistic people often notice aspects of the environment that others miss, and they often react more strongly to art, music, and beauty in general. Once overwhelming or painful stimuli have been reduced or removed from an autistic person’s environment, efforts can be made to increase enjoyable stimuli.
“Autistic women have been referred to as empaths and emotional sponges because they feel things deeply and pick up on the emotions of others on an affective level. … Difficulties sorting and processing multiple emotions intensifies distress and creates an additional layer of emotional anguish.”Dori Zener
Just as with sensory sensitivities, the ability to read others emotionally can be profoundly rewarding for autistic people. It can lead to greater intimacy with others, a new career in a helping profession (such as in psychology or social work), and deep insight into the human condition. But it also has the ability to overwhelm, create anxiety, and send stress levels through the roof.
Autistic people often need assistance in creating healthy boundaries that help invite or retain positive and rewarding social interactions and keep negative and unhealthy social interactions out. Without this, the burden of carrying other people’s emotions and emotional states can lead to significant distress and even physical and mental illness.
Due to the above ongoing issues, it’s important that newly diagnosed autistic women seek therapy or counselling with a trusted psychologist or therapist. Ideally, the therapist is autistic themselves or highly experienced in working with adult autistic individuals. Some therapists use the phrase “neurodiversity affirming therapy” on their websites to indicate that they work from a strengths-based and pro-autism approach.
“The goal is not to help individuals become more neurotypical, rather it is about accepting and embracing one’s autism.”Dori Zener
4 responses to “Three issues facing newly diagnosed autistic women”
One of my watershed readings was “Aspergirls” by Rudy Simone. I cried through that read, as it was the first time I felt understood.
Thanks for a great article on the ongoing issues faced by women diagnosed as adults. I’d love to see an article on the immediate challenges that follow adult diagnosis. In addition to the relief and self-recognition, there’s grief for the painful years of not knowing what was wrong, anger at having been misunderstood and unsupported, the overwhelming process of integrating a completely new self-understanding and dealing with the invalidating reactions of loved ones who do not understand the relief that diagnosis can bring. It can be overwhelming, especially for those newly diagnosed in middle age or as older adults, to incorporate a complete revision of the story of our lives.
Thank you for your article. As i am slowly coming to an understanding of my newly diagnosed 22 year old daughter, having fairly completely misunderstood (though entirely accepted) her until now, I am also painfully aware of what she must have felt, and how ineffective and perhaps even damaging some of our parental strategies were: STOP eating your fingers, try to enjoy yourself, SMILE, listen to your tummy, be kind to your friends etc, etc. However we are living in an age where people are more open than ever to understanding difference, and it would be good for everyone, and very welcomed I think, to have a better understanding of the autistic way of seeing the world.
Spot on! Thank you SO MUCH!