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Autistic women’s experiences of diagnosis

:: Autistic women’s experiences of diagnosis

 

• 1 Positive & negative experiences
  • 1.1 Reactions to autism over time
• 2 Strategies that help post-diagnosis
• 3 Further reading
• 4 References
• 5 Tags
• 6 Disclaimer
• 7 Comments

 

Acceptance after diagnosis is essential
for the well-being of autistic women

Research shows autistic women struggle with significant exhaustion from trying to hide their difficulties and conform to societal expectations. Participants felt that diagnosis often helped them understand their needs and be kinder to themselves. Diagnosis also helped women interpret what had happened to them in the past. Finally, it helped them connect with a community and improve relationships. While a diagnosis identifying that a woman has autism is the most significant factor in her future well-being, research shows that acceptance post-diagnosis is essential for autistic women.

Having never viewed autism through the prism of disadvantage, I saw my autism diagnosis in a positive light. Before my diagnosis, I felt constantly misunderstood and lonely. Though I was camouflaging significantly, I never felt any real effort by others to understand me. I suspect most people did not know that I was not what I seemed.

My diagnosis also led me to review my whole life and the experiences I had within the framework of autism. The heightened empathy to the degree that I always needed to solve friends’ problems so that they and I could feel better. An obsession with the colour purple. The sensory differences, such as gagging from certain foods. I preferred sameness, such as drinking smoothies daily, eating pasta with ketchup daily for about a year, or repeating a song on a loop until I eventually got sick of it. A voracious thirst for knowledge. The avoidance of social situations when at all possible. And so on. This review consumed me for many years, and now, seven years post-diagnosis, I still uncover new information to contextualize my life as the research pours in.

Autism: Unmasking: 3 Steps to Take Off the Mask

 

Is masking good for you in long term? For some autistic people, masking has been so comfortable because it protects them in a lot of situations. Some autistic people would rather hide their authentic selves than being worried about people not accepting them.

Autistic masking has its benefits but it also has its downsides, too. It can make more damage to your authentic self more than you can imagine. In this video, we'll discuss more about masking and the 3 steps to take off the mask.

TIMESTAMPS: 00:00 - Introduction

00:35 - In this video

00:58 - The purpose of masking

03:06 - 1st step to take off the mask

05:24 - 2nd step to take off the mask

07:02 - 3rd step to take off the mask

13:48 - Empowering aspect to dropping the mask

 

Handling Disclosure as a Self-Advocate

By Ryan Walsh

As an autistic self-advocate, it is no secret that disclosing my autism to others has and always will be a complicated process throughout my life. There are many factors that go into how, when, why, and to whom I will disclose my autism, but they all have to do with the purpose for the disclosure and the anticipated response. I do believe there are times where disclosure is disadvantageous as a result of potential mistreatment. When I do disclose, I generally only share the information that is relevant to the individual I’m disclosing to.

There are, of course, the responses I expect and those I don’t, and it is always a matter of unknowns as to whether disclosing will actually aid my self-advocacy in the end. With that being said, I generally tend to disclose my autism whenever I feel that it serves a purpose for myself or another person. For example, when I worked at a Starbucks, one of my coworkers asked me why I was so disorganized all of the time when I moved between my stations. I told her that I have autism and that my executive functioning skills often led me to do things outside of the most logical or efficient order. I also explained that my time management skills were not always the best, and so I tried to prioritize getting the customers what they needed as fast as possible before doing things like cleaning, even though the rules demand that we clean and produce products simultaneously. I added that if I did not clean or organize something immediately, she should not worry and I would get to it at a time that I felt was most productive for me. I also told her that if she needed something done right away that she should not hesitate to ask me and I would refocus myself to the necessary task. She responded that I “didn’t look like a person with autism” but that she was glad I informed her so she had an explanation for my behavior at work.

For anyone who discloses their autism to others on a semi-regular basis, these kinds of lukewarm responses are all too common. On one hand, the person genuinely wants to be supportive and is glad to have been made aware of an important fact about their friend or coworker. But on the other hand, they may not have the necessary tools or knowledge to have an informed response or help in a way that is most effective for you. This is one of the better case scenarios, because it is also possible to encounter individuals who actively discriminate against autistic people. This is why I prefer to disclose when I feel that I can trust the person I’m disclosing to. When I disclose to new friends and in other social situations, they are generally supportive. I tend to run into more difficult situations in impersonal environments where people may not be as supportive.

This variability often makes disclosure a tricky choice for me, because I never know how a person is going to respond. I can only hope that they wish to be helpful, and even if they do, the stigma that society perpetuates is often still evident in their response. I do not hold these individuals accountable for how they respond when they are trying to be helpful, as I understand that their intentions are good. This does not mean that these responses are not upsetting to me or that people should not try to educate themselves. I don’t believe that any one person should take on the responsibility of trying to solve the massive issue of societal stigma but instead try to be a source of knowledge for those around them.

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Asperger/Autism Spectrum Fact Sheet

 

About Asperger/Autism Spectrum:

• It is neurological and affects the way information is processed in the brain.
• It is often an invisible difference. Many people appear very competent, but have difficulties in areas of communication and social interaction.
• It has a genetic and hereditary component and may have additional interactive environmental causes, as yet unknown.
• It is a developmental difference. All individuals have social/emotional delays, but continued growth seems to be life-long.
• The prevalence of autism is 1 in 59 (CDC, 2018).
• Girls and women are under-diagnosed. There are currently four males diagnosed for every one female, but the true ratio may be as high as one female for every two males.

Common Strengths:

• Average to high intelligence
• Unique sense of humor
• Honest
• Strong sense of fairness and justice
• Specialized interests
• Feel things deeply
• Detail oriented
• Good memory, especially for facts in their area of interest
• Build friendships through shared interests

Common Challenges:

• Sensory sensitivities (hypo or hyper) to light, noise, smell, touch, movement, or taste.
• Fight or flight emotional responses that seem extreme for the situation-but are often due to underdeveloped coping skills and an unpredictable or overwhelming environment.
• Social anxiety or anxiety in general.
• Perseveration, perfectionism, or asking for help.
• Stamina for persisting through boring or challenging tasks.
• Flexible thinking and problem solving–seeing the world in black and white.
• Organizing, planning, prioritizing, initiating, persisting (executive function skills).
• Understanding verbal and non-verbal language in social contexts.
• Understanding what others are thinking and feeling (e.g. Theory of Mind or Perspective Taking).
• Missing unwritten rules that aren’t taught explicitly, but others pick up more intuitively.

Additional traits some individuals may have:

• Low muscle tone and difficulty with fine motor skills; although some excel in individual sports or are tremendous artists.
• Co-occurring mental health diagnoses like depression or anxiety. ADD is very common.
• Superior skill in a particular areas such as painting, writing, math, music, history, electronics, or composing.
• Difficulties working in groups.
• Low self-esteem can be an issue for individuals, especially when they don’t see that others around them are experiencing the same challenges that they are.

Asperger/Autism Spectrum Tips:

• Learn about the diagnosis and how it affects you.
• Learn how and when to talk about it to others (disclosure).
• Make time to explore your interests and use your skills–don’t only focus on your challenges.
• Find a supportive community where you can be yourself (like AANE!).
• Work with a coach or therapist to help you identify and plan how to reach your goals.
• Analyze how environment, sensory needs, and social demands impact your energy so that you know which activities and people help you relax and which raise your anxiety or stress.
• Get help with social and communication skills so you will feel less anxious interacting with others.
• Consider medications, with the guidance of a professional.
• Set up routines and prepare for transitions.
• Do not force eye contact–as many people experience it as painful.
• Provide organizational supports (visual supports may be better for some people).

 

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Understanding Autism Therapy Using the Internal Family Systems Model

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April 12, 2021 by Dr. Tasha Oswald:

As an autism therapist, I have been asked by clients and other professionals to describe my approach to autism therapy. Throughout my career, I have researched many different therapeutic approaches to determine what would be best for the neurodivergent clients I serve. I have found Internal Family Systems or IFS to be a powerfully effective way to help clients manage anxiety, and improve mood, self-esteem, and interpersonal communication, and treat trauma.

I am passionate about the IFS model and am excited to share with you how I use it to help teens and adults who are neurodivergent. My hope is that understanding the IFS model will provide you with a necessary framework to better understand yourself or a loved one with ASD.

What is Internal Family Systems

The Internal Family Systems model, or IFS for short, recognizes that all people have a Self and parts. Take a moment to think whether you have ever heard someone say something like, “Part of me feels hurt, but another part of me feels angry”. Naturally, we refer to “parts” when describing our own inner experience.

Richard Schwartz developed the IFS approach after listening to many people in his therapy office describe their inner parts. He learned that the inner turmoil people experience is often from parts that are polarized (e.g., part of me feels lonely and wants friends, but another part of me avoids people for fear of rejection). Richard Schwartz also came to realize that all people have a Self, which includes qualities like Self-compassion, non-judgmental curiosity, and calm. The Self, he discovered, can help resolve inner turmoil and bring balance to our inner system. This allows a person to feel more comfortable and confident, less torn about decisions, less anxious and depressed, and more hopeful.

 

Three Types of Parts

All people have three types of “parts.” These types are: vulnerable parts (exiles), firefighter parts, and manager parts. Below, I will break down the different types of parts and give some examples. As you are reading, I invite you to think about your own parts and how they may be impacting your thoughts and actions.

 

Detection and Diagnosis of ASD in Females

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Marcia Eckerd: 

Autism in females is often unrecognized and undiagnosed. This article describes the presentation of autistic traits of females and how they differ from those of males with autism. Screening tools for assessing autism in children, adolescents, and adults are identified and described. The process of clinical assessment of females for possible autism are described, including the disclosure of potential diagnoses to the patient.

Michelle is a self-referred, 24-year-old woman complaining of anxiety. Her anxiety impacts sleep and seems to worsen physi- cal GI symptoms. She is appropriately dressed, having come af- ter class, and she is articulate although she takes long pauses to collect her thoughts. She graduated from an excellent college, and she is attending graduate school in English literature and was working part time until recently. She quit her job because her boss frequently yelled at her about not meeting his expectations. She felt he was never clear and constantly changed what he wanted her to do. She felt anxious every day and dreaded going to work. She had quit a prior job because she found it difficult to work in the constant close “team” environment of the office. The team members regularly went to lunch together or out for drinks after work at a noisy bar, neither of which she enjoyed. She felt that her right to a private life and need for time alone were not understood. Michelle lives in her own apartment. Michelle describes herself as a child “always having her nose in a book” and loving reading. She felt she had not fit in socially through all levels of school. She reports few close friendships, although she had friends in school and had been somewhat friendly with a woman in her last job. Parties and family events made her nervous. She didn’t feel that her parents understood her point of view about attending family events, although they were generally supportive of her. She had not dated until college, and then had one relationship that she broke off. Michelle appears to be a serious young woman of high intelligence. She does not display much emotion, despite being obviously upset by her situation. Her descriptions of her experiences are very detailed. When asked about her feelings, she often does not respond beyond saying she was anxious. Is this social anxiety or something more complex? Should a pos- sible diagnosis of autism spectrum disorder (ASD) be considered? What exactly does ASD look like in female patients?

Autism: Disclosure for Adults

(Note - Aspergers is not currently a term used - the preferred term is Autism/Autistic)

Introduction

Disclosure is the process of making known what was previously unknown. This can mean an individual disclosing to others their suspicion of, or diagnosis of, their own Asperger profile. Additionally, this can refer to the process of a person suggesting to another that they might fit the description. In more broad terms, disclosure refers to the process of navigating conversation related to the topic, whether that be in relation to work, friends, family, or strangers.

Disclosure is a process that every person with an Asperger profile navigates, each in his or her own unique way. Most of the time, an individual’s first identification with this profile is met with enormous relief. The sentiment, “Oh, that explains so much!” is not an uncommon response. This discovery is often experienced as a revelation, in terms of understanding personal struggles, strengths, and differences that have spanned decades. Of course, some people can be resistant to the idea of identifying (at least at first) with this category, and that is why we are talking about ways to be sensitive to the process.

The DSM diagnostic criteria written from a Neurodiversity perspective

"This is a historic blog post which I want to share, mostly because I really like it and it is an example of the strengths approach to autism. We are almost on Neurodiversity Pride Day and I thought this was a good pride piece…

When I was writing The Guide to Good Mental Health on the Autism Spectrum, I had to dig out the diagnostic criteria for Autism in the DSM- 5. It made me sad, so I decided to whip out my advocate brush and give it a neurodiversity-based touch-up. I hope you like it. I’m not sure how a doctor would use it but I prefer it to the original version. The way it works is that I have listed each category of the DSM -5 diagnostic criteria for Autism in italics and underneath have redrafted it. Enjoy.