Category Archives: Autism

(Self) Awareness

I remember sitting in the brightly lit room talking to my new Primary Care Physician (PCP). After a very negative experience with my previous provider, I had waited months to meet with this new doctor who came highly recommended. My hopes were being pinned to a white lab coat of a  person I hadn’t yet met, but a doctor who everyone said ” truly understands” and doesn’t judge. Since my last doctor wasn’t able to even address my disabilities or how they impacted me there was still nervous apprehension.

 

I talked about the challenges of being able to care for myself lately and how I felt like a failure for not being able to work as much as my non-disabled peers.

“Your worth is not measured in the ability to work an arbitrary number of hours per week,” was her first response to me.

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The biggest thing I’ve been struggling with is being kind to myself.  I am aware I hold myself to higher standards than anyone else does and I don’t even hold others to the standards I make for myself. That’s an issue I’ve even faced with this blog. There are times when content does not come out because it’s not “perfect”, yet “perfect” is an illusion. Especially to an artist like myself.

 

There’s still a huge amount of internalized ableism that comes from being “passing” as not disabled and not receiving the appropriate services at a younger age. There’s a pressure, mainly ones we place on ourselves, to meet the same milestones at the same time as our peers or do things the way they do. The harm of using functioning labels is one that has been addressed multiple times by my peers. Those considered “lower functioning” have their strengths ignored while those “higher functioning” have their challenges ignored. This is a very real problem facing our disability community and one that advocates are trying to address.

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2017 has not been an easy year so far by any stretch, but it has also already been an amazing experience. The only way for me to move forward and continue to thrive is to chip away at what has not been working. Sometimes we need to dig up the foundations in order to make the building more solid. Being kind and putting myself first is one of the ways I can start to take better care of myself.

The AWARENESS of this month

April comes around once a year, yet it seems like the other 11 months are spent recovering. March was a very rocky month for me emotionally and physically so this Autism Awareness/Acceptance month has caught me off guard. I also actively choose to not engage in the 5 million autism posts this month as it gets very draining and instead am very selective of where my comments go. Self care has become a new and welcomed part of my daily life and it’s even more important during this month. So as I’m finishing up my official Autism Awareness/Acceptance post, here’s a smaller one.

Things I did instead of dwelling on Autism Awareness/Acceptance Month

  • Paint my toenails
  • Practiced spinning my props a LOT
  • Dyed part of my hair purple
  • Folded my laundry
  • Went to the gym
  • Ran away to Albany, NY
  • Saw The Mountain Goats in concert
  • Cleaned my bathroom
  • Made food for myself
  • Performed a gig on a catwalk
  • Attempted to get enough sleep

Me and my people

Currently, I’m relaxing in Boulder and doing my best to figure out the next steps of this wacky thing called ‘life’. The greatest part of all this is I’m surrounded by one of my mentors and still feeling the effects of the Autism Society of America conference.

The joke came up several times last week about how several of us go to the Autism Society of America conference to be social. It’s a once a year trip most of us make to unite us from across the country. Navigating the whirlwind of meetings and presentations, either giving or attending, we still manage to reconnect in the hallways or in the evening.

On the last night of the conference, what was only going to be a brief dinner with an old friend and my mother turned into something so much better. It started by inviting new friends to join us. That quickly turned to other friends showing up and soon we were taking over a large section of comfy couches. The evening was spent talking about everything as we watched lightning dance across the Denver skyline.

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That last night before the end of the conference, I was stressed and very nervous about my early morning presentation looming the next morning. My topic for the Sisterhood of the Spectrum panel was “Authenticity”. At 8:30 in the morning, still adjusting to Mountain Standard Time compared to Eastern Standard Time, I would speak about the importance of embracing who you are and knowing others have walked the similar path.

One of the greatest things I have come to understand and accept is that I have people in my life who truly care about me. There are people in the world who genuinely want to support others and wish the best for them. I am one of those people and am very thankful for being surrounded by the same type of people. My people are kind and care about each other. This is something very special I was able to be reminded of at the conference.

Sometimes the best parts of the conference are not covered in the program guide.

Anatomy of a meltdown

A child’s resting heartbeat can be as low as 60 beats per minute.

One of my earliest medical memories is standing in a cold white room learning how to attach electrodes to my skin with words like ”heart defect ” hanging in the air. Doctors had no idea how a young child could go from a very low resting heart rate to over 240 beats per minute while simply sitting in a chair. Walking across the room at home, I’d simply drop to the ground with pain shooting up my left arm. This happened seemingly randomly and later on these carried the simple label of “panic attack” so it was just a part of my life. This was years before my Autism diagnosis when I was simply referred to then as a “hypersensitive child”.

As I grew up, these panic attacks began to take a shape and a clear pattern emerged.

The word meltdown sometimes gets thrown around with people thinking it is equivalent to a temper tantrum. That could not be more wrong. Children (and adults) throw tantrums to get something. Meltdowns are your body’s way of saying it is overloaded. The human body is capable of taking in millions of pieces of sensory information a day, however there is a limit. This limit changes based on a myriad of variables and can be different from day to day.

Even years later, I’m still trying to figure out my warning signs of a meltdown before I’m in one. The biggest warning sign I’ve been trying to push past is exhaustion. It doesn’t matter if I eat well, hydrate, am in limited physical pain, or anything else as there is a clear tipping point for me. The tipping point is related to my Achilles’s heel.

Social skills.

I’ve spent my entire life trying to study social skills through movies, TV shows, books, observation, and imitation. Inside my head lives hundreds of social scripts for thousands of life situations other people simply experience. It’s only very recently I’ve felt comfortable enough to build my own scripts in public or with people I don’t know too well. People who do know me well have a better idea of how my mind works and know I sometimes “cycle” or repeat conversations without intending to. They also know my conversations can jump around from topic to topic seemingly randomly.

My meltdowns look like that scene in the remake of Stepford Wives when Faith Hill starts misfiring and sparking on the dancefloor. My emotions bring me to an anxiety loop where I go from calm to crying repeatedly. My left arm  stops behaving like an arm and my heart races. My hearing sharpens and so does my sense of smell. My eyes become very sensitive to light. The worst part is feeling trapped unable to speak.

My words tend to fail me and often I can only mutter “help, please help.” My mind races, but perseverates on either real or imaginary flaws. It’s my own personal torture and one I strive to keep behind closed doors. It’s a combination of fear that has me try to hide these struggles. I am afraid of others seeing my weakness in moments where I am my most vulnerable. In these moments of being completely overwhelmed in the world, there is a thought floating in my mind that this is The End.

My meltdowns pass and I always survive, even though I never think I will at the time. When I was a kid, the heart monitor I wore would upload the recordings over the phone line once a week when it was plugged in. I would sit next to the machine for almost an hour as meltdowns were a frequent part of my life. Now they are further apart, but are still a part of who I am.

Life has struggles and everyone goes through them differently. The kindness shown to me by friends when I’m struggling with meltdowns is overwhelming to me. Even something as simple as a smile or asking if I am okay helps me. I am so thankful for having kind people in my life who understand I do get overwhelmed. I do try to hide my weaknesses, but I’m lucky enough to have people not who don’t run away when they see me looking like a hot mess.

I remind myself tomorrow is always a new day and a day to try again. A meltdown one day simply means I need to change something the next day. I will survive and be stronger, personally and in my relationships with others, the next day.

A Road To Me: Acceptance. Love, and Self-care: #AutismPositivity2015

Fridays are normally a “social” night. However, the upcoming weeks will be breaking my brain a little bit with all the social. Starting right now, the next and last free day I’ll have until June 4th is this upcoming Thursday. I’ll be traveling to 4 different states for multiple events.

Yes, I’m very glad I recently purchased new tires.

I’m willing to drive hundreds of miles in the upcoming weeks with loads of social interactions and new experiences for one simple reason.

I found communities where I can be myself 100%.

My trips will take me to two major flow events. For these weekends, I can spin my props until I can’t feel my hands anymore. Then I’ll spin using other body parts just to keep spinning. Reconnecting with amazing people who don’t flinch at my obscure pop culture references allows me to be social in my own special way. I literally get to talk about or indulge my special interests almost non-stop and it’s so liberating.

I’m free to be me.

Self Love is a work in progress for me. There have been deep dark holes in my past where I didn’t like myself. I fell into the spiral of negativity; which has ALWAYS been around my social interactions with people. Saying the wrong thing, doing something awkward, laughing at the wrong time, getting lost in the conversation: those little things other people never paid attention to or noticed ate me up from the inside.

Then one day I woke up and realized who I am.
I’m Brigid.
There is no one else exactly like me in the entire world.

Every day is a new change to play and explore the world around me. The first steps to fully embracing myself involve not being so judgmental or holding myself to lofty expectations. My apartment will never be spotless and my laundry will only be fully put away when it decides to communicate with me. “Perfect” is an illusion we create of some imaginary life we think we are supposed to have.

Instead of being social tonight, I’m taking it easy at home. I’ve defrosted a pizza and have a bottle of wine. It’s an Eternal Sunshine of the Spotless Mind type of night as I get things prepared for an active weekend in front of me. Tonight needs to be restful so I’m on top of my game for this weekend. Take it easy on yourselves and treat each other well.

And maybe it’s funniest of all
To think I’ll die before I actually see
That I am exactly the person that I want to be
Amanda Palmer- In My Mind

Food Stamps and Ableism

I live in Maine.

Recently, our state has gotten more nationwide attention because our Governor has made statements and policy changes about the use of Food Stamps. In the past year, our state has required photo identifications on EBT (electronic benefit transfer) cards to reduce fraud. Maine has also implemented a policy requiring “able-bodied adults without dependents” to work, volunteer, or be part of a vocational training program for at least 20 hours per week in order to continue receiving food stamps. In a state with marijuana legalized for medicinal purposes, he also is trying to push for universal drug testing.  Even Fox News has described our Governor’s plan as one of the “boldest welfare reforms”. Governor Paul LePage has also recently issued statements about wanting to prevent EBT users from purchasing items like soda or chips.

If you have never gone through the process of applying for food stamps, I’m not sure you understand what it is like. It’s not as if you walk into a building and they hand you a preloaded card with thousands of dollars and tell you to run wild. It’s a process taking a minimum of months if all the bureaucratic wheels are running smoothly. You need to demonstrate your continued need for assistance by paystubs, bills, leases, ect. Even then, you may be lucky to get 17 dollars a month for a  household.

Recently, there has been a surge of “outrage” by fellow nosy shoppers who are judging what EBT users are purchasing. I have a few HUGE issues with this.

1. Why do you care what other people purchase?! (I literally NEVER notice what other people are buying in line because I always have a momentary panic thinking I forgot my wallet once I’ve arrived at the register.)

2. How does what anyone else chooses to put into their body affect you or your life?

3. What makes you think you know what someone’s life is like based on the few moments of their life you observe reflected in the items on a conveyer belt?

Invisible disabilities exist all around us including those affecting us mentally and/or physically. I’ve been told I don’t “look” disabled, however those wonderful employees who work at the grocery store near me may have a different opinion. Sometimes there is not the energy to cook a meal from scratch. Other times we need to get nutrients ASAP or else something not good may happen to us. Other times my sensory system will prevent me from eating anything other than a restricted number of foods.

Don’t judge what people buy.
Period.
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Earlier this year I was very sick. I lost 9 pounds in just 5 days because I could not eat anything and my survival was solely based on 100% fruit juice popsicles. When I could finally stomach food, my body was craving red meat. This is a family trait and one we identify as “turning the corner” to recovery. I used my debit card for my purchase and I’m not sure if anyone noticed my payment method.

Did they see the graduate student who presents internationally on Autism and part of an award winning performance troupe?
Did they only saw the girl with the messy hair in sweatpants buying a steak and make the assumption she was a “welfare queen”?

I know they didn’t see the face I made while eating my first meal in almost a week or my face as I fell asleep with a nutritious meal in my stomach, instead of with the hunger pains I know all too well.

Bring on 2015 conferences!

So I’ve been getting into the ‘zone’ of being back in school, or at least trying to find the zone, so I seem to have missed something really awesome.

March 14th I will be presenting at the Southern Maine Autism Conference located at The DoubleTree Hotel in South Portland, Maine.

This is the third year in a row I have presented at this conference and I love doing it. This is a free conference to attend and that helps to spread important information to people who need it. My session is entitled “It’s Not Easy Being Me: Highlighting the Strengths”. I’ll be discussing strength-based perspectives instead of deficit based models and talking about self-advocacy.

For more information and to register for this event, please visit the site below.
http://www.maineautismconference.org/

In a related note; if you have a conference in your area you’d like to see me at please let me know! I also accept invitations to speak at small groups and do training sessions.

Not a person with…

Since this came up again recently, in several mediums, it’s an important topic to talk about.

I’m Autistic.

I do not identify as a person with autism.
I also definitely don’t suffer from autism, so if you think that you are totally on the wrong blog.

 I’m working on my Master’s right now and even when I submit papers, my teacher will try to correct me. “People are more than their disability” the red notes in the margin say. Oh yeah, I’m more than autism but autism is me. Autism affects my daily life, like it or not. The only time I’ll say I’m living with autism is in reference to creatures I live with, humans or felines.

I choose to use identity-first language and this is a conscious move on my part and the part of many other self-advocates. When I get politely told off by parents and professionals for saying “River Tam is autistic”, those are the little moments where I get to try to have a teachable moment. Would you say a “person of Italian heritage” or would you simply say an Italian? How about “a person with homosexual tendencies”? We teach educators and professionals to use person first language, but like gender identity, how about we ask they person how they would like to be identified. Let’s not make assumptions because of how a person looks or how they behave.

There are many different branches in the disability population who do prefer person-first language over identity-first. Again, I am speaking specifically about the autism community. Personally I’ll respond to being called pretty much anything, but there may be an eye roll if the phrase is really condescending. The point is; it is our choice on how we want to present ourselves to the world and the significance of our word choices. For decades it was parents and professionals speaking out and advocating for the autistic community. We have now found a voice and should be respected for the things we have to say.

Autistic is not a dirty word.
It is a strong word.

It is not okay to kill your child

“Well, I can understand…”

“Well, she was under a lot of stress…”

“We can’t judge…”

“We can’t know…”

If you read my letter to Alex, you know it really affects me when parents murder their Autistic children. What also contributes to the issue is people who come to the defense of the murderer. I will say that even though I did not birth him, I still acted as my brother’s parent growing up. He may have been an unholy handful at times but I’d sooner kill myself than him.

The discussions that are not happening are about the other options for the parents besides the extreme. Extended family visits are an option and, in some states, abandoning your child is also an option. In situations where there is another parent, say to them “I’m going to a motel for a weekend to sleep and read by myself or I may kill our child.”

This is not happening to deaf children.
This is not happening to diabetic children.
This is not happening to children born with degenerative medical conditions.

It is autistic kids who continue to be murdered.

Hyposensitivity or Did you feel that?

Hyposensitivity is when a person has difficulties processing input through the senses. This means more stimulation is needed to properly register a sensation.

Hi, my name is Brigid and my tactile sense is completely hyposensitive. This means my sense of touch is not as defined as other people’s. Yes, this is the reason why corsets are relaxing to me and deep pressure in the form of weighted blankets or crushing bear hugs are so comforting.

So when I was younger I broke my arm. Now the problem was, I didn’t realize my arm was broken.
For 3 days I didn’t know it was broken.
It was not until it had swollen up completely and my mother insisted on taking me to the hospital. See, the problem was I could not actually register the pain of a broken arm. For people like me, this can make doctor appointments very complicated because the pain scale of 1 to 10 does not really make much sense. I don’t know what a pain rating of 10 would be for the average person. I don’t even flinch when I get tattoos or piercings. See the issue?

For those who are hyposensitive, we search out sensory input. For those of us who have a hyposensitive vestibular system, we can spin around forever on those teacup rides at amusement parks and never feel like we are going to loose our lunch. It is only with the extreme sensations do we have a little more comfort in our own bodies.

One of my favorite sensory accommodations is a weighted blanket. I’m currently working to afford one because I’ve noticed they can help calm me down in record time. This summer I was under a total of 30 pounds of weighted blankets and then asked my mom to sit on my lap, it was a stressful time but it completely regulated me. Until then, I’m currently sleeping under several thick blankets and full sized pillows to get the same feeling.