Posts Tagged ‘Autism’

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This is Me

April 30, 2022

On this last day of Autism Acceptance Month 2022, I find myself reflecting.

A little over a year ago I received the greatest gift I’ve ever been given-A late adulthood diagnosis of ASD, and with it, the keys to my body.

Who knew it would be when we all had to wear masks that I’d finally realize I’d been wearing one all my life?

Without COVID, and the unique circumstances that came with it in my particular situation (ask me for the story sometime. Very particular things occurred, that only would have occurred during the global pandemic. But even with the global pandemic setting the stage, other fascinating things occurred in the order that they did…anyway…it boggles my mind. But definitely without the COVID piece, I would likely have not received this gift.) I would never have come to this diagnosis. While I hate everything that has happened with COVID, I’m sooooo grateful for this gift that has come along with it.

For the past year, I’ve been going through a process of finally understanding how my body works. After 39 very confusing, often emtionally painful and once or twice very dangerous years, I now can make sense of things, and with that process the greatest gift of all-true, geniuine self love and awareness and compassion and understanding and validation and affirmation and, gah! Just so many wonderful things!

With it being Autism Acceptance Month, and a little over a year of my own self-work coming to terms and doing my own acceptance work and privately sharing this information with a few of my closest friends and family, I feel ready to finally share it with all.

I am sooooooo tremendously grateful for this gift of self understanding that I will now carry with me for the rest of my life.

Armed with new tools, language, understanding and support, I am very much looking forward to a less chaotic and confusing life existence in this second half of my life, with hopefully much less or even no more other/self-imposed shame/doubt/fear /feelings of less-than.

This is me. And this is why.

When I look at past me, I am so extremely proud of her. Now knowing what I was unknowingly carrying with myself as I naviagated all those life experiences, and still perservering. Just….wow.

I believe this may be our anthem-it’s a great visible representation of the invisible differences people with ASD may face daily.

I’ve always loved this song, and ha! Now I know why. Seems to be something I’ve been saying a lot lately. “OH! Now I know WHY!” on sooooo many things. It’s been SUCH a healing year for me.

“Look out! Cause here I come!

I’m not scared to be seen, I make no apologies,

THIS IS ME!”

#autismacceptance

Autism- What I Wish People Knew:
It is a neurological not a psychological difference.

My brain wiring is different than that of neurotypicals (NT).

While I am pretty smart and do not have intellectual impairments,
I do have social impairments and am extremely affected by sensory inputs.

If you could see a PET scan of my brain next to a NT’s brain and have us both walk through our daily lives, my brain scan would look like a giant firework show, whereas the other would be a much boring er show. (Sorry NTs)

Here is a great write up and side by side picture comparison of what I’m talking about with none other than one of the Autism community’s most well known: Temple Grandin. Scroll down to the beautiful picture of the two brains. And also come back to read the full article: https://www.usatoday.com/story/news/nation/2013/05/01/autism-temple-grandin-brain/2122455/

Having autism for me is much like watching a duck calmly glide on top of water. However, you are only seeing part of it. Look underneath the water and those feet are paddling. HARD!

This is a bit what having ASD is like for me- Compensating the hell out of everything. (It wasn’t until this past year that I realized this isn’t everyone’s life experience.)

All social interactions…..and I mean all, are processed in my pre frontal cortex. Most people process social interactions automatically with some pre frontal cortex work. Not for me.

This is taxing. It would be like doing high level maths. All day long. Every day. So I like to limit my social interactions.

I wish people understood that sometimes things I say come off wrong and I don’t mean it at all. Call me on it. Nicely. I want to grow and change. I may make the same mistake again.

I wish people knew that:

Telling someone with with autism to “just get over it” or “get on with it”, or telling them that they SHOULD be able to do a thing or to “PUSH THROUGH” is like telling a person in a wheelchair to take the stairs if they want to get to the second floor.

Make no mistake, it is a disability. One that I have had all my life, and have learned to compensate for. Getting a bachelor’s degree in psychology and then a master’s degree in counseling and human services. I have literally studied how to human.

I wish people knew: Not all disabilities are visible.

And while I have some disadvantages with this neurological difference, (see social skills, verbal communication, sensory overload) I also have some pretty cool advantages.

I wish people knew that I see myself and this difference as a true gift!

I have DEEP empathy.

I am loyal to a fault.

I am honest to a fault.

I am well read. I have a gift with writing. Probably developed due to all the reading and also my lack of strong verbal skills.

I experience the world on a different wavelength with sights, smells, sounds, emotions, tastes, touches, all of it. This can be painful at times, but it can be amazing at times too. Pair these experiences with my writing skills, and I can take a reader along for a ride with me in my world.

I wish people knew….

What it takes for me to show up. I compensate the hell out of things. I mask and study. It’s genuine, but it’s practiced.

If I deem something is worthy of my time and energy to engage in (friend time, volunteering, work, etc.) understand the extra behind the scenes work. Just remember the duck. Calm on top, but paddling like crazy under the water’s surface. (I’ve gotten much better at this over the years, but there are still social situations that I regress in for a multitude of reasons.)

I wish people knew…
What it takes for me to stay regulated and to also understand if I get into a state of deregulation, my need to have unencumbered time to re regulate.

I wish people that were close to me and other ASDs…I’m looking at you significant others, parents, siblings, supervisors, friends…while you don’t need to read everything you can about aspergers and get behind me/us 100 percent, it would help if you were to be somewhat versed in it. PLEASE DO NOT THINK you’ve got us all figured out and therefore put your heads in the sand about hearing anything else that challenges your assumptions and makes you examine your own behavior toward us.

Do not feel sorry for me.


My life used to be so confusing with lots of blame, shame and guilt.
Now it is less confusing and I have a lot of confidence and self love and compassion.

Lastly and most importantly I wish people knew….

That I am still me. I’m the same person that you’ve known before. Nothing’s changed. Except for my own self awareness, and now yours. ; )

This is ME.

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Autism Acceptance Month

April 1, 2022

April is Autism Acceptance Month.

May I present to you on this first day of April,

Hannah Gadsby, and the article/interview recently written:

https://www.theguardian.com/stage/2022/mar/19/hannah-gadsby-autism-diagnosis-little-out-of-whack

I’ve followed Hannah for some time when I stumbled across her stand up comedy routine on Netflix, “Nanette”, which is pretty widely known.

Hannah is perhaps best known for her stand up comedy. It is there where she really began talking about the topic of autism, but also other core issues that are common fodder for comedians. What makes Nanette so well known is that it is said that it is the show where she put it all on the line in the last 14 minutes of the show, saying what she wanted to say, with the plan of “quitting comedy” afterward. Possibly thinking she obviously would have to quit after what she said on that stage.

In a recent Conan O’Brian podcast interview with Hannah (which is a great listen and hilarious), Conan describes Nanette’s release as: “…a seismic cultural event. One of the most discussed television happenings of the year, if not THE most discussed. It was absolutely breathtaking.”

The podcast can be found here for a listen if you’re interested: https://open.spotify.com/episode/2fXTqYWWhhhZlAdftEnTMW

You can sense it in Hannah’s Nanette routine, a shift in the air, where toward the end of the show, there is a slight change in gears and she really sends it home in true, blunt, autistic fashion, telling it like it is about some pretty heavy topics and as they say in the show business: dropped the mic on the topic at of how damaging a life it can be to not only live as the target of hate, but to live in a world that allows for hate, and the responsibility we all have to stand up to it. Ringing the alarm, blowing the whistle. Making us all feel terribly uncomfortable. And to sit in our discomfort. In the comfy chairs for the live audience at The Sydney Opera House where the show was filmed in. And for all of the rest of us privileged folks at home in our own comfy chairs.

Comfy chairs. Uncomfortable feelings.

Like I said, it’s a very well known comedy routine for this reason. It made newspaper headlines.

If you haven’t watched it, give it a go. Like all stand up comedy, there are parts you like, parts you may not like…but she’s good.

But in the surprising follow up to Nanette (spoiler alert, she comes back to comedy and thank goodness for that), she touches on the topic of autism in her tour of her show “Douglas”.

But in this latest article, she’s coming back for more and using her influence and platform even further to push the much needed topic of explaining and educating the general population as well as mental health professionals, doctors and the like to shine the light on receiving a late-adulthood female autism diagnosis. To open up the discussion and get people talking.

So, what stands out for me in this article?

Firstly, it’s her thoughts on being misdiagnosed for so long, and the implications that came with it. Hannah states,

“It was difficult to believe that I wasn’t entirely to blame for my life being such a painful struggle.”

She describes this as the result of the many myths of autism and the misunderstanding that comes with that- what autism is, or what it is not- due to it being not largely talked about in the adult community. Autism is a topic for parents with young children. It is not a topic for the 30 something year old trying and desperately struggling to navigate the very loud and bright and people-y aisle 9 of your local grocery store.

However, Hannah is talking. And she’s talking adults with autism. A VERY MUCH NEEDED TOPIC OF DISCUSSION not only for those bumbling and fumbling adults out there diagnosed or not (yet) who need their own keys to be given to them for their own bodies, but also this is a topic to be discussed and further understood if we are all to get along together in a human way on this planet. This recent article is a great one and in a blunt fashion (bluntness is a common characteristic) she states it simply, “It is just a sad reality that I have to waste even more of my time to bring many of you up to speed.”

But up to speed she brings us, and if I may say, along with the huge community of other late adulthood diagnosis females with autism…thank you.

Things resonate in this article. When she states, “Ever since I can remember, my thoughts have been plauged by a sense that I was a little out of whack, as if belonging was beyond me.”

And because she’s a comedian, and great to read or listen to…she goes on to state, “you might wonder if I might perhaps be a lizard. I am not. Not piss off.”

That is Gadbsy for sure. Her voice is great to read. She has since written a book titled “Ten Steps to Nanette: A Memoir Situation” , and it’s next in my cue of books to read.

https://amzn.to/3LFspXy

She describes her own experience of autism in the article above, “I see my thoughts… My head is not a static gallery of sensibly collected thoughts that my brain curates into easy sense. It is not linear. It is fluid and flexible…that I am constantly revising and editing.”

“I have never managed to develop a relaiable system to file and separate my thoughts into individual think pieces, and so I am utterly incapable of having one thought without at least another hundred coming along for the ride”

While everyone’s experience will be different and at different levels, holy cow. Was she at dinner with me last night and listening to me talk to my boyfriend? It was a nightmare, and yet…just another dinner date for me. Well, to be honest, I thought it was quite a frivolous and fun conversation that took lots of colorful twists and turns with great imaginative stories….but perhaps that is just me. I do think my boyfriend enjoys the ride sometimes.

Anyway, the article goes on with great examples of what it is like inside the mind and body of someone with autism. There is adventure and delight sure, but there is pain and struggle. Perhaps most well put when she described the following, “I developed an instinctive habit of taking the blame whenever I didn’t understand what was going on around me – which to be clear, was all the time. This struggle persuaded me to assume that I was unlikeable, and eventually I stopped thinking about the world through the lens of my own needs.”

“This is not a recipe for good times.”

Indeed Hannah. Preach.

Good news is, diagnosis of young females is getting better, but as a high school counselor for 15 years, (2006-2019) I’m here to tell you it’s still not that great compared to the boys. In hindsight, thinking of all the young females I worked with that were displaying some of these traits: anxiety, depression, social stress…I now wonder, was something else hiding beneath the surface of these usual diagnoses?

Parents, if you have a young girl….ask questions of your doctor. Females are missed. Educate yourself. A great book on the topic is: Aspergirls by Rudy Simone. https://amzn.to/3LETIRw

Parents may be asking themselves why they should ask their doctors and ask questions, especially if their female child is high-functioning.

Quick definition moment: High-Functioning Autism: a controversial, antiquated term that needs to be updated in the language, but that is used to describe a female or male that is not displaying low-cognitive, basic needs along with their autism. Note: It does not mean they are high-functioning in all areas of their life. By any means. But instead, are often masters of disguise and are simply masking and making do as best they can often to the surprise of many around them…except for those few that are highly educated in autism and in catching the often subtle signs.

But I can understand why a parent may not want to lean in and advocate and push for further screening of their female child if they fall into this above category. I often wonder about if the topic was ever brought up to my parents in the early 80s from a concerned teacher or pediatrician. I can imagine them, if it was ever brought up (not likely was it ever brought up), dismissing it because I was hitting my marks in so many ways. And gosh…the label. (I’ve heard that one ALOT in my years as a school counselor).

Well Hannah breaks it down here, and I couldn’t agree more:

“I wish more than anything that I had known about my ASD when I was a kid, just so I could have learned how to look after my own distress, instead of assuming my pain was normal and deserved.”

There is a line in her comedy routine Douglas that states, “Getting a diagnosis was like getting the keys to my body.”

Everyone should have a right to that.

In case there are still parents out there on the fence about having their female child screened, take it from me, a girl who grew up into a woman and has spent 38 twisty, turney, confusing, oftentimes very sad years as a result of not getting that screening….

Get the screening.

And if you’re worried about the label? Well, newsflash. They’re going to get labeled. It’s what we as humans do, label things, to make sense of things. And unfortunately, without the correct label, a child or adult with autism with get mis-labeled. And mis-understood a million times over- at work, in relationships, in life. Worse yet, is when the child or adult as a result of not being diagnosed and given the correct label, will go on to label themselves as a result of all this confusion that is their life experience: “broken”, “unloveable”, “unworthy” “unemployable” or worse. That’s where the REAL damaging label is, the self-issued one out of low self-esteem and poor self confidence from a life of confusion. Un labeled, they will never know the real cause and solution of so much of their struggle and pain.

This image below just about sums it up for me on the topic of labeling: (Please read and imagine your sweet 8 year old as 38 years old and feeling this way, and the STRUGGLE of a JOURNEY they will have navigated all those years because you thought you were protecting her from a label of a diagnosis. Instead, think of the release and permission to self-advocate and understand and love themselves you will have given them):

Sure, I think the timing of telling your young female child she has autism is important, and to be developmentally intentional with what and when you tell them about it and what it means for them. Pairing up with the experts will help you on this. There is a ton of literature for parents out there. Podcasts. Programs of group support, therapy. Get educated. Start with yourself, and then support your daughter as she develops.

Now, for the other adult women out there reading this, undiagnosed and struggling. Seen or not seen- you are not broken, you do not “deserve” this experience. There is nothing wrong with you, there is only something different about you. This difference comes with many strengths or what I call superpowers, but yes, also challenges. Speak up. Ask for help. Get a diagnosis. Get educated.

As Hannah states, “Stop worrying about what you are expected to do, and work on things you can do to make yourself feel safe and calm.”

Honor yourself and your needs. Unapologetically.

Hannah goes on to describe her way of giving herself grace and patience and loving kindness while also accommodating herself and her needs with a level of self awareness. This new found self-awareness is a true gift to herself, and myself included with my own journey. She now instead of worrying about where she has difficulties, she leans in to them focusing on areas she does have control over, such as her environments:

“I am always working to remove myself from all the cycles and patterns of hostile environments.”

Hostile environments? This writer here can recall a few pretty bad ones of those from her past. Hm….all the better for my book and my own “memoir situation”.

What makes this article so great in my opinion, and in the opinion of the numerous women on the online threads I’m a part of- is that she continues to shine a light on areas of growth and change for herself in light of her late adulthood diagnosis. Describing her own road map of how she has learned to navigate her struggle and honor her needs. Giving herself love and grace along the way, and in doing so, has given the rest of the undiagnosed (or diagnosed for that matter) female adult population with ASD, not only permission, but also a call to arms for all of us to demand better for ourselves. To advocate for better for ourselves. This is the only thing we deserve. Better.

In work. In relationships (Dating, friends, family, self). And in this writer’s opinion, in the very unfriendly toward ASD folks-in the grocery store.

Autism is only fairly recently “understood” if you can call it that. Still to this day however, males are being identified way more than females. Many females have this life experience that Hannah describes, only coming to their own adult diagnosis when their own children (if they choose to have any) are diagnosed in the early elementary school years. (Again, likely only if they have a boy)

I look around at all the women who are in their 20s, 30s, 40s and 50s or older and wonder how many of us are out there bumbling along like Hannah describes, self-punishing themselves. I wonder what it would be, if each woman could be freed from this self-punishment and move more toward self-awareness, self-love and compassion, empowerment and advocacy for change in their lives, and ultimately toward reaching our own potentials. (Of which there are such amazing and deep talents in so many areas)

And so, I am grateful on this first day of April, the month that is known as autism acceptance month, that a person such as Hannah Gadsby exists in the world. That she is using her platform to share her experience, hopefully for the better of other women beside her.

And to Hannah, if you’re reading this, as you asked in the last beautiful two minutes of your Nanette routine, I only hope that I have “helped to take care of your story”. May the braveness and tenacity and courage you took on to share your story on that stage, reverberate for years to come as each of us, inspired, share and take care of your story.

That we ALL collectively and in a human spirit, move the narrative of female autism in a different direction. So that all may experience a life free of hate, trauma, abuse or worse due to our differences, but are instead celebrated for them and ultimately that each human reaches their potential. Of which yours, has been truly a blessing. To only think what would have been had you been broken. What a loss. Because instead, by reaching your potential in comedy and beyond, you have given back beautifully to this world.

Leaving this writer to wonder, what other amazing and beautiful contributions to this world are out there untapped? May each person find their strength and shine their own different lights.

I believe Dumbo displays it best (Honestly, a lot of Disney and many story lines in literature, music, film and art are on this very subject, if you look close enough):

Masking vs. being true, authentic self
Because those differences (when fully supported) can be HUGE gifts to work settings, relationships and more!

Okay…bonus material for those who are just really interested in this topic, I highly recommend the following interview as well: https://open.spotify.com/episode/6cVlrd5mRHdx5AlFJyXRAG?si=U41a5Kh3R_ChVPuf1vNNWw