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Autism in Kenya: An Autistic Advocate’s Perspective

M. Kelter, Interviewer theinvisiblestrings.com Content note: mentions of restraint, ableism Netplus Kenya has been hosting an online series of moderated discussions in an effort to address high levels of stigma against people with disabilities there, stigma associated with long-standing cultural practices. This series is called the Watoto Wetu Initiative. It’s next installment is this Saturday, August 28th, and will feature autistic activist Karen Muriuki sharing perspective on the urgent need to minimize life-threatening stigmas so that families can begin improving outcomes and quality of life for autisic people and other vulnerable communities.  I communicated with Karen to ask about this speaking engagement and about the challenge of sharing information in areas where traditional beliefs define how many perceive and react to autistic differences. M: What is the main theme of this event and who is the audience these presentations are intended to reach? Karen: The event is about the need…

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At Home in Ourselves: A Mindful Acceptance of My Autistic Son

Photo © Stuart Anthony | Flickr/Creative Commons [Image: Two backlit people attempting to jump over a horizon-adjacent sun.] Leslie J. Davis www.dharmamamas.com “When I practice breathing in and I say, ‘I have arrived,’ that is an achievement. Now I am fully present, one hundred percent alive. The present moment has become my true home. When I breathe out I say, ‘I am home.’ If you do not feel you are home, you will continue to run. And you will continue to be afraid. But if you feel you are already home, then you do not need to run anymore. This is the secret of the practice. When we live in the present moment, it is possible to live in true happiness.” –Thich Nhat Hanh, “No Death, No Fear: Comforting Wisdom for Life” Every Monday night I sit with my meditation group and practice breathing in and out in an attempt…

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Mental Health and Autism: Why Acceptance Matters

Photo © Mariana Zanatta | Flickr/Creative Commons [image: Hand-drawn black-and-white outlined block letters spelling “anxiety” on a background of “anxiety” written repeatedly in black & filling all space.] Christine Motokane www.workingthedoubleshift.com It is well known that individuals on the autism spectrum are likely to have co-occurring mental health issues such as depression and anxiety. However, mental health is a less-discussed topic surrounding autism, compared to behavior and social challenges, etc. As an autistic young adult with anxiety,  I can give personal insight on this high prevalence. A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack…

Parents: Let’s Talk About Grief and Disability

Spectrum Disordered www.facebook.com/asdisordered Let’s talk about grief. To be specific, let’s talk about a specific way the term “grief” is used: as a suggested framework given to parents to process the news that their child has some type of disability. I’ve encountered this outlook throughout my life. My parents, by well-meaning professionals, were set up to view my disability as a loss: I was not normal, and would have to fight against my deficits for my whole life. They would not know what my future looked like and could not plan. They should feel Very. Sad. About. This. Having a grief mindset instilled into my parents was the single most devastating thing that has happened in my entire life. I learned very quickly that I was broken, and that there was something wrong with me. I learned very quickly—and at a very young age—that my parents would have preferred a…

[[image description & transcription: A full-color hand-drawn comic strip. The first row contains two panels. The left hand panel has a green background. A blond white person on the left is talking and maintaining eye contact with the olive-skinned person with long dark hair on the right. Black all-caps hand-lettered text on a white background above their heads reads: “For allistic people (non-autistic) eye contact is a way of connecting with others in conversation.” The right hand panel has a blue background. On the left A black person with a natural hairstyle is looking down, with an uncomfortable expression on their face while on the right a white person with long straight hot pink hair and bangs has their eyes closed tightly. Black all-caps hand-lettered text on a white background above their heads reads: “For autistic people, it’s different. Eye contact is uncomfortable and invasive.” The second row is a black rectangle with white hand-lettered all-caps text reading: “When we look away, it doesn’t mean that we are not listening. We are not disrespecting you.” The third row is one large panel. It is a close up of the eyes and nose of a white person with straight long purple hair and bangs, with eyes wide open. Black all-caps hand-lettered text on a white background at the top of the panel reads: “If we try and make eye contact with people, it can totally distract us from what is being said because of how horrible it can feel and the effort involved.” Red-outlined word bubbles around the edge of the panel, in black all-caps hand-lettered text on a white background, read: “Keep looking” “Having I looked too much?” “This hurts” “Am I doing this right?” “I have no idea what they’re saying” “Can’t do this” and “I feel so vulnerable” All caps hand-lettered black text under the panel reads: “© Beth Wilson 2017”]

Eye Contact

There are good reasons why many autistic people avoid eye contact. And “when we look away, it doesn’t mean that we are not listening. We are not disrespecting you.”

The third row is one large panel. It is a close up of the eyes and nose of a white person with straight long purple hair and bangs, with eyes wide open. Black all-caps hand-lettered text on a white background at the top of the panel reads:

“If we try and make eye contact with people, it can totally distract us from what is being said because of how horrible it can feel and the effort involved.”

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Under a Double Rainbow: Autism and LGBTQIA+

Photo © Ted Eytan | Creative Commons/Flickr [image: Multiracial crowd rallying with flags and signs behind a banner reading “Trans Solidarity against transphobia for justice”.] Maxfield Sparrow unstrangemind.com Ten years ago, I wanted to write a paper about autism and gender issues for a gender and sexuality conference at which I had previously presented. I started the research, then dropped into a depression after realizing how little material was available, and that the existing research about autism and gender was both dismal, and erasing. The medical journals talked about transgender autistic children as if their gender issues were delusions, mere symptoms of their autism. I never wrote that paper. Today, not only is there good autism information available, but the “double rainbow” of being both autistic and LGBTQIA+* is just beginning to be more accepted and understood. We have a long way to go, but people are beginning to understand…

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Helping Autistic Children Understand Death and Dying

Maxfield Sparrow unstrangemind.com Photo © Benedic Belen | Flickr/Creative Commons [Image: Black-and-white photo of an Asian woman comforting a small crying child who is wearing a tiara, and has their hands over their face.] The Thinking Person’s Guide to Autism asked Autistic adults to fill out a survey about death and dying to create a resource for people who need to explain death to Autistic children. The response was tremendous—in less than a week the survey had 50 responses, mostly from Autistic adults. What follows is a summary and analysis of the responses. We hope it is useful to you, your child, your family, your clients, and your students. Please note that some of the responses discuss difficult material, including suicide, and suicidal ideation/threats. Bullet Point Summary Autistic adults were surveyed about death and dying. Most learned about death through observation of people, animals, and plants. Learning about death was…

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Why Everyone Should Read The ABCs of Autism Acceptance

Patricia George www.persnicketypatricia.ca The ABCs of Autism Acceptance [image: Book cover, with white text reading “The ABCs of Autism Acceptance” on a background of multicolored representations of letters of the Roman alphabet, above black text on a white background, reading, “by Sparrow Rose Jones.”] I’ve been an avid reader my whole life, so when I was asked to review The ABCs of Autism Acceptance by Maxfield Sparrow, and saw that it was “only” 152 pages, I thought, “this won’t take long to read, so sure, I’d love to!” 

I was wrong. This is the largest 152-page book I’ve ever read. In fact, I wrote more notes for this book than I did for a 500-plus page book I reviewed in 2015.

 The book’s title is straight-forward: Maxfield uses the Roman alphabet as a way to educate the reader about autism acceptance from an autistic person’s point of view, while interlacing…