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Posts tagged ‘adults’

The Challenges of an Adult ASD Diagnosis

Receiving the diagnosis of ASD can be many things; scary, surprising, an explanation, a relief, etc. I’ve always viewed it as the first step in the path of overcoming the obstacles you’re inevitably going to face due to the condition. I was diagnosed with Asperger’s syndrome (which is no longer a thing by the way) back when I was 14. That’s pretty late in life, especially when compared to many of my fellow students in the Learning Academy back when I attended in 2014-15. For many of us, the signs have already shown themselves by early childhood, but what happens when they go unnoticed or even ignored for decades? It used to be that adults were essentially never diagnosed with autism, and it was seriously stigmatized. While things have improved at this point, I still feel like autism is viewed as something only young kids experience; that it just goes away once you reach 21. In this piece, I want to discuss the process of diagnosing an adult with ASD is like, and how it feels to receive a diagnosis so late in life.

As I mentioned, autism awareness seems heavily geared towards children. Thankfully, with so many breakthroughs in the psychological fields lately, making early diagnoses is more efficient than ever. However, sometimes people can slip through the cracks, and that’s where the problems begin. Katherine Stavropoulos, a mental health clinician, lays out some of the issues with adult cases. One major reason why clinicians are hesitant to test adults is because of this clause in the DSM-5 regarding ASD: “Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).” Say someone in their 30s wants to receive a diagnosis, it’s no simple task to get a complete rundown of their childhood, especially if they have no close relatives. In addition, many of the testing methods for ASD are geared towards kids and teens, but as of just a few years ago, a new test called the Adult Repetitive Behavior Questionnaire (RBQ-2) was developed, which has seen use as a convenient tool in this regard. Perhaps consider checking it out if you find yourself in a similar situation to what I’m describing.

So what’s it like being diagnosed in your 20s or even beyond? I’ve always been grateful to have received my diagnosis when I did, since I’ve had 10 years to form healthy and effective coping strategies. Imagine being like Samantha Ranaghan, who was 34 when she got diagnosed. Actually, maybe it’s not too hard to imagine, as (despite the age gap) I found everything she talked about in her blog to be incredibly relatable to how I felt. From finally feeling “normal,” to life making sense, people saying “you don’t act like you have autism,” it seemed to be a positive thing in her life. This is just one case of course, but there’s very little out there of adults talking about their diagnosis. While everyone deserves a proper evaluation, I can’t help but feel adult ASD diagnoses will only become rarer in the future as we get better and better at detecting it from a young age.

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Farewell to CARD

As I “retire” from CARD-USF to move on to a hundred other activities, I have been reflecting a lot lately on: how much I will miss everyone at CARD; how much I will miss USF, which has been part of my life since 1967; how much I will miss being a librarian, even if I’ve been kind of a “pretend” one for the last couple of decades; and how much I will miss keeping up on the latest research, publications, and news, though the osmosis effect of social media ensures that I won’t miss much.

Mostly, I am thinking about how much things have changed for families since my daughter was diagnosed in 1992:

  • Her original diagnosis of PDD-NOS no longer exists as a diagnosis
  • Asperger’s disorder no longer exists as a diagnosis
  • Children diagnosed with autism spectrum disorders (ASDs) in the early 90s were very likely to be placed in programs designed for children with emotional/behavioral disorders, or intellectual disabilities, but rarely in programs designed for children with ASD diagnoses. Very often, children with ASD were placed in center-based schools. We have watched education evolve from a dearth of teacher preparation and services, through developing expertise thanks to professional development efforts of school districts and organizations like CARD, through segregated settings at neighborhood schools, to a current landscape in which many more students are fully or partially included with their peers in regular education classes and activities.
  • Interventions have gone from consequence-based, punitive “treatments” to antecedent-based, positive supports that seek to make the whole environment supportive and oriented toward increased communication and prevention of challenging behaviors.
  • Community venues such as child care sites, summer camps, restaurants, movie theaters, theme parks, resorts, zoos, orchestras and museums have gone from being fairly unwelcoming environments, to seeking out training and support from CARD to open their doors and programming to customers, visitors and employees who have ASD.

One of the most beautiful advocacy movements that has emerged over the past twenty years has been the self-advocacy movement working for acceptance of all individuals with or without diagnoses. This movement has recently been represented most visibly by the author Steve Silberman, in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published by Penguin Random House in 2015. Many public libraries have this book, or can get it via inter library loan if you are interested in reading it. This movement seeks to move from “awareness” to acceptance. Once individuals who have traditionally been marginalized by society develop their own voice and presence, it becomes impossible for them to continue being ignored, and changes happen quickly.

As the parent of an adult with ASD who is very challenged by social & communication issues, I will take with me into retirement a renewed sense of my daughter as an individual with unlimited potential who deserves to be accepted fully by her community, even if she needs a bit more assistance in developing her own voice. But it should be her voice – not the voice of well-meaning people thinking they are speaking for her.

Thank you CARD staff, families and friends, thank you everyone in CBCS and USF for the gifts of your friendship, wisdom, and insight. I leave here the better for having known and worked with all of you.

– Jean

jean and anna 2

Still Learning from My Adult Child with ASD

noise
Long ago, I stopped accepting most of the things that are supposed to be true about people with autism spectrum disorder (ASD). Recently, I was reminded about two of these supposed “truths”:
     1. People with ASD make meaningless sounds such as humming, and sing or recite content from movies just to hear themselves make noise.

     2. People with ASD have sensory processing issues that must always be controlled externally by altering the environment or providing them with additional tools such as weighted blankets, noise-cancelling earphones, or other sensory-calming products.

Whether verbal, non-verbal, or somewhere in between, our children have a lot to teach us about how they perceive and process the world around them. Perceptive parents quickly learn a lot from their offspring – about ASD, about children with other differences, and most importantly, about their own children as individual human beings.

This is a little story about tuning in to my 26-year-old daughter, whose habits, movements, sounds, and sensitivities I know almost as well as I know my own, though I don’t always understand the communicative intent of her behaviors.
Three mornings a week, a van arrives to transport Anna to her day program.
Every morning for several years, she would pace, recite movie lines and hum in an agitated manner with her fingers stuck in her ears in anticipation of the van’s arrival. As it pulled up in front of the house and the horn honked, she would gasp loudly and push harder on her ears, then walk out to the van holding both her lunchbox and her ears.

For the past month or so, there has been the same van, same driver, and two quick honks on the horn, all of which have made much of the morning more predictable and easy. However, the time of arrival still varies each day, and that still meant there was enough unpredictability that waiting was anxiety-producing.

Over the last few weeks, Anna would pace, cover her ears, hum and chatter only for a few minutes, then as the time drew nearer for the van to arrive, remove her fingers from her ears, and peer intently out the window. Inevitably, within 60 seconds of the time the van actually arrived (how does she KNOW that?!), she would softly insert her own closely approximated version of the tone, pitch, and time interval of the two quick horn blasts into the rest of her chatter. “Yada yada yada yada beep beep yada yada yada yada.”

It took a few days for this to get my attention, but once it did, I also noticed she no longer gasped and clamped her hands over her ears when the van arrived, and it dawned on me what she was doing. She was preparing her sensory system for the unpredictability of the arrival time, using her own version of the sound of the horn, something like an auditory immunization. It’s brilliant! All of the muttering and chatter seems to be meaningfully connected to the two little honks she makes.

So – two things are still true, after all these years:
• never assume odd noises and sounds are meaningless, and
• it’s easy to miss noticing when our children teach themselves calming and self-management techniques on their own and apply them to specific circumstances.

This story does not negate instances where self-produced sounds may be stimulating or reinforcing for unknown-to-us reasons, nor does it argue against the anecdotally reported benefits of sensory-integration tools and techniques. I appreciate fellow parent Beverly K. for pointing out that we especially need to remember many of our younger children have not yet developed self-management and self-regulation skills to help them deal with bothersome sensory input. For parents of younger children – when people tell you, “It gets better” – this is the kind of wonderful thing they mean.

Watch and listen closely! We never know what our children, no matter what age or ability, might have to teach us!

  • Jean

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