Seeking A Diagnosis

From the sanctuary of my rooftop, I listened as my family clamored around the dinner table, laughing, joking, and chatting away. My behaviors, I learned, were primarily the result of undiagnosed ADHD and OCD, and my family was reacting to symptoms that were too difficult for them to understand at the time. My repetitive behaviors, like playing the same song over and over again for months, or watching the same movie endlessly, also drove them away. I would be disciplined for my "Bad " behavior, and I frequently carried a deep sense of shame and embarrassment for being so "Mean, " "Crazy, " and such a "Problem. " I was constantly seeking affection and attention from my siblings, who only saw me as needy and overbearing. My siblings and I did the best we could do at a time when there was very little education or acceptance around behaviors like mine. The behaviors I exhibited in childhood that caused so much strife were traits of real mental health conditions and neurodivergence - body-focused repetitive behaviors, OCD compulsions, and stimming. Today, diagnosed and treated, these behaviors sometimes still drive me crazy.

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A week ago I discovered that my daughter, my mother and I all suffer from undiagnosed Adhd. A large part of that - I now know - is due to my untreated adhd. When I pick up the kids, I speak to my ex about my Adhd and my daughter's suspected Adhd. I'm reminded of all the times I needed him to support me and what I thought was depression when we were married. Nothing about this conversation smells like a dopamine hit! Didn't I just tell this man I have Adhd!? But then again, not only does he not believe me, he doesn't fully understand or accept that Adhd is a whole disability on its own! Because of the trauma I experienced as a neurodivergent, undiagnosed Black girl, I projected many of the same ignorant beliefs on my daughter. My. Business allows me to work from home and spend a lot of face time with my kids whenever I have them.

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I needed to stop myself from rushing headlong into becoming something I'm not. It was time to figure out how to position myself for sales. I decided to go through Lara's diagnosis process because, going into the business accelerator program, I needed to know exactly who I am. I needed to see my needs clearly and how I might care for them, because after years of denying so many aspects of myself, I honestly didn't know. Put simply, I needed outside help to get to the core of my identity so I could give myself the support I'd long denied I needed. Knowing about my autism helped me find a way to voice my needs in the accelerator program. With this knowledge, I have more freedom to innovate and experiment - even to fail, if that's what it takes to honor my needs.

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For most of my life I didn't feel like I fit in. So to an extent, not feeling like part of the mainstream could be partially attributed to living under the white supremacist patriarch that basically only pays attention to Black girls for exploitation or abuse. Unfortunately a lot of adulting requires this and thus I spent most of my adult life feeling like a failure. What I want for my children is for them to have a solid understanding of mental health and the mental health conditions that run in the family. What I don't want is for them to discover their family's mental health history only after they've had their own mental health crisis like I did. If you suspect you may have a mental health condition, talk to a licensed mental health care provider. My hope is that as I speak candidly about mental health, others will find the courage to seek help as needed, especially other Black Women and those who've been historically excluded and oppressed by dominant society.

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cross-posted from: https://pawb.social/post/1160724

crossposted from: https://lemmy.world/post/966154

Parents often wonder if their child finding out they are autistic earlier or later will have an impact on their lives in the long term. While many people who discover they are autistic as adults wonder what life would have been like if they had found out earlier. Other factors were more strongly linked to quality of life: Autistic women reported a better quality of life than autistic men, and people who had additional mental health conditions reported a lower quality of life. Because we know that many autistic people experience a very poor quality of life and well-being, this begs the question whether finding out you are autistic earlier in life improves outcomes. "Our findings did not suggest this. For some people, finding out they are autistic sooner rather than later was linked to a better quality of life. For others, finding out later was better. Overall, there was no overall link between the age they found out and their quality of life." "There could be many reasons for this. Getting an autism diagnosis does not always lead to any meaningful additional support, so it could be that autistic people who learn they are autistic at an earlier age did not necessarily experience a benefit to their life quality. Equally, a late diagnosis in adulthood can be a positive experience, helping people to make sense of themselves, which may improve their self-reported quality of life. The take-away message is that the impact of an autism diagnosis on someone's quality of life is different for everyone. And there may be other, individual factors that are more important to focus on." "Additionally, being male and having additional mental health conditions was linked with poor quality of life. These observations highlight the importance of considering support strategies that are gender-specific to have a more targeted focus on improving autistic people's mental health, to improve their life outcomes. There has understandably been quite a lot of discussion on autism and mental health in females in recent years but, based on these findings, we should not overlook the needs to autistic males who might also be struggling."

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Tony Snell spent nine seasons in the NBA and currently plays for the G-league Maine Celtics. Known for his skills on the court, he's now using his platform to highlight something else: autism awareness. In a recent interview with TODAY, Snell shared that he has been diagnosed with autism spectrum disorder. He'd also been stimming, or making repetitive movements known as self-stimulating behavior, a sign of autism. His family also launched the Tony Snell Foundation, which works toward autism awareness and acceptance and focuses largely on minorities diagnosed with autism, for whom there are disparities. Black and Hispanic/Latino children are less apt to receive an autism diagnosis than their white peers, likely due to a variety of barriers to tests and services. Help those with Autism and their families at The Autism Site for free!

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Summary

Drawn out: Despite early screenings, families wait an average of 27 months for an autism diagnosis.

The average delay from an initial autism screening to obtaining a diagnosis is more than two years, according to a new study.

The findings may explain why the average age at diagnosis has stalled at 4 years old since 2000, despite recommendations from the American Academy of Pediatrics in 2007 to screen all children at 18 and 24 months old.

Children with autism can't receive care until they have a diagnosis.

Autism diagnosis in that cohort occurred, on average, almost 27 months after the first developmental screening, the team found.

"Having data on which screening test was administered and the results would have given a more complete picture of the effects of autism screening," Paul Carbone, medical director of the Child Development Program at the University of Utah in Salt Lake City, told Spectrum in an email.

"There are so many more families that need an autism diagnosis than there are places to go, slots for autism evaluations. The need greatly eclipses our country's capacity."

> It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults (N = 300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic.

A machine-learning technique called ‘federated learning’ makes it possible to screen datasets for people who may have autism without plugging their information into a centralized server, thereby skirting privacy issues.