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I Am Autistic. I Am Exhausted.

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At 37 years old, I have lived and worked in London for 17 years.  I am female, reasonably educated, maintain my own home, car and job. 

I am autistic.

I am exhausted.

Like some other women on the spectrum, I was not diagnosed until I was in my 30s, and understanding and coming to terms with that knowledge has taken time. It has taken time to unravel the course of events through which my life has been woven and time to understand the challenges that have led to health and emotional crises.

Three things it is important to understand:

  1. Autism is not a mental health condition, it is a neurological and therefore physical disorder.
  2. Autism does not mean a lack of difficult challenges in some people, simply that they may be more masked.
  3. There is an 85 percent unemployment rate amongst working-age autistic adults in the U.K., according to the Big Business Boost.

Like much surrounding autism, there is a general misconception of how the spectrum works. When we look at a spectrum in any other context, we tend to depict it as circular; take the color and light spectrums as examples. However, when people describe the autism spectrum, they seem to have the image of a straight ruler, moving people up and down a scale dependent on “how autistic” the outside party deems the person they are interacting with to be. As an adult who is considered “high-functioning,” this often leads to unhelpful external input regarding the difficulties I experience on a daily basis. People often see a mental health disorder and not a condition that can have physical characteristics.

As one of the 15 percent of autistic adults who have maintained work throughout adulthood, the exhaustion of the daily sensory overload of working in one of the world’s most frenetic cosmopolitan hubs, navigating the personal interactions and the long working days have taken a dramatic toll that I am only now beginning to understand. 

Sensory overload I can only describe as akin to being trapped inside a Faraday Cage with electricity being shot at you that the cage is not protecting your brain from, with the neural pathways triggering and misfiring electrical responses that cause your mind to retreat as a physical trickle-down occurs to the rest of your body. The result of this is commonly described as meltdown, looking to an outsider like a temper tantrum, but actually the reaction to an explosion of internal pain caused by an electrical release from all of your nerve endings at once.

Thirty-seven years of dealing with this while navigating the world has led to monumental burnouts, where I haven’t been able to function for weeks, meltdowns of such epic proportion that they have led to accidental overdose and hospital stays just because I realize now I was trying to find any kind of relief. The loss of friends, the loss of jobs, occasionally what feels like the temporary loss of sanity.

The reason I write this is that it is important for people to understand that an independent, functioning life as an adult on the spectrum is possible. I work in offices in jobs that require negotiation skills and vast amounts of interaction, I create policy, I work with data, I occasionally people-find for authors. I use the subset of skills that autism has enabled in my brain to find the stories in patterns. What is vastly important is understanding self-care and how to manage any challenges so they don’t over-ride you. That is why advocacy and increased understanding of how to live are so important.

There is a story as old as the world that tells us that, as humans, we are here to connect; only connect. Sentient beings, it is built into our DNA to link with each other, build relationships, families, community. And when you look at the science of it, I suppose that makes sense. All of the evidence is out there, written into the building blocks of nature and of the universe itself. There’s a magnetism to the space we inhabit, to the world around us, that draws everything together. Whether it be Einstein’s Gravitational Waves or the Golden Ratio, the ecology of connection and the ways in which we fit together are scattered and hewn into every particle of every organism across the entirety of space and time. And so it happens that connection begets connection and in turn begets life. We are born of the connection between our parents, into these families and communities and in turn build our own relationships, families and communities, down through history. A constant thrum of connection and creation. While it often seems that autism is a disorder embodied by disconnection, what I now understand is there are ways for everyone to fit; it is just a case of shuffling the pieces and making the small adjustments until we do.

I would like to work towards a world where neurodiversity in the workplace is fully understood, and employers can make adjustments for this. I would like to live in a world where I don’t get home from work at the end of the day and have to sit in a darkened room for hours. I would like to live a life where I can go out in the evening during the week or on a Sunday evening and not be totally wiped out. 

But until that point, now that I understand, I just need to do whatever tiny things I can to improve understanding and hopefully eventually improve life for others on the spectrum.

Image via Thinkstock

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What I Found in My Autistic Son's School Bag Made Me Burst Into Tears

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Another year at school starts. Another year where the odd-looking artwork and short stories will arrive at our house. I’m sure for many parents and guardians, looking through the plethora of items sent home during the school year is an absolute delight. The best pieces make their way to the fridge or are framed for all to see. But it’s not quite the same in our house. It can be bittersweet. Each year we see some sparks of improvement in my son’s work, but he still has difficulty in school. He has a teaching assistant help him all day, every day. Sometimes they help him complete work, and it’s pretty obvious when it happens. Still, we are always extremely proud of his efforts.

Sometimes there is an accidental item in there. We’ve gotten a piece of Romany’s work or Jacob’s work. And that’s what I thought had happened when I picked out this piece. The writing is too small, too neat and too close to the line, I thought. There some capital letters in the right places, and is that an exclamation mark?

little boy's drawing of a person

Our son is in a mainstream school. He has had a diagnosis of autism since he was 4 years old. Though the terminology of the challenges that may make up an autism diagnosis has changed a little in the years since, it still fits that our now 8-year-old has difficulty with his language and his social interaction. He can talk obsessively about topics such as the Formula 1 Grand Prix, whether you are interested or not. He can have difficulty with language and understanding how to use it. He’ll tell the truth even if it’s not something you want to hear. He scripts, reeling off lists. He doesn’t register that he talks loudly. He has little understanding of personal space.

He hasn’t been invited to many birthday parties since his first year at school, and we often still make our excuses, as the events are a bit stressful for him. I can count the number of playdates we’ve had on a single hand. Part of it is the difficulty in organizing one when there are other kids involved and you can’t just leave him somewhere without support.

When we pick him up from school he is excited to say goodbye to his friends, but he still declares his best friend to be his dad (which I secretly love but hope one day he is not.. before maybe being again). Lately he has asked if he could have other friends to play… and I have approached this possibility with the same slightly excited logical outlook for most things with the kids: what would work for us and which of the parents and kids we know it might it work for too. It’s a small list, to be honest, but my latest find makes me wonder if I’ve been underestimating my son.

Among the paintings and rainforest collages this year I found this absolute gem that brought more than a tear to my eye. My find is an outline of a person. “Anthony” is written in plain fine letters across its torso, and multi-colored writing surrounds its body.

The multi-colored writing is from his classmates and is a loving list of things Anthony is good at, (replicated exactly as written):

  • Well, is a good footballer
  • a good learner (thank you teacher)
  • a good runner

Then it gets better:

  • always very happy
  • Friendly and funny
  • a nice person to play with
  • very kind and friendly
  • Fun and really friendly!
  • you will let other people play
  • very friendly
  • A nice person to play whith

Then the joy:

  • is very kind friend – best frind
  • a great friend
  • A fab friend
  • A good friend *
  • A lovely friend
  • The best friend ever!!*

And my absolute favourite:

  • When I ask to play with him he says yes

It’s not all about writing, math, art, etc., and we may understand this more than some other parents. Look at what he finds difficult and then look at what his classmates, his friends, say about him. In the last week we went to a playground where he also found some friends to play with. It’s so lovely to see. So this year on the fridge we have one of his paintings…

“Anthony this is beautiful, can you describe it to me?”

“I’ve forgotten what it is supposed to be”

“It’s lovely, I really like it, shall we put it up.”

“Oh yes,”

…and I’m jumped on as he shows his excitement. And next to it along with some others, is this rather plain outline drawing that reminds my son of his friends and reminds me of how far he really has come.

You can follow Anthony and his family at www.rainbowsaretoobeautiful.com.

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A Letter to My Autistic Son About Where You Will Live as an Adult

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Dear Son,

I’ve been having conversations about your future lately with various people, all of whom I truly believe have your best interests at heart. We’ve been trying on phrases like “shared living” and “group homes” and “sheltered workshops,” and I’ve been rolling them around in my mouth, trying them on for taste. None of them taste nearly as good as chocolate.

You see, I’m trying to figure out our collective future, where you will live, where Daddy and I want to live (according to your father it’s not a permanent stint in Jersey), and where your brother, who is also autistic, fits into the picture too.

Let’s just say it’s complicated.

You see, my heart is torn, my sweet boy, because as much as you’ve matured and grown since those difficult days 12 years ago when you were diagnosed with autism at the tender age of 17 months, some things with you have not changed. You still love being at home. You still want to leave said home for about an hour each day and do something wonderful. The only place you ever want to stay more than an hour is Great Adventure or Disney, and with the latter being a bit financially out of reach on a frequent basis that leaves us with Six Flags and the occasional Pixar movie for outings of any length.

Your needs are complicated.

I have friends, friends whose sons and daughters are autistic adults, who tell me there is still room for growth, that I don’t know how you’ll change and grow in the next eight years before you graduate from high school. I speak to them of the group homes their sons live in, the day care their kid calls college, the seven-day-a-week in-home care they’ve fought for and won for their child. I read books and blogs about autistic adults and their particular work and living arrangements. For many of them their transition has been fabulous. And I know in my secret heart of hearts that if I’m honest, most of these pretty choices may not be for you.

You see, if I had my way, I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after. This dream is why your mother runs every day and limits her wine consumption (most of the time).

One might ask how I know this is right for us when you can’t tell me yourself.

I know this the way I knew something was seriously different about your development at 16 months even when your pediatrician didn’t seem that concerned given your father’s childhood, and told us to “wait and see.”

I know this the way I knew my world was forever changed when just a month later he shoved some articles into my hand with the word “autism” in their titles, told me to call a developmental pediatrician, and basically shoved me out the door. I also know our pediatrician was an a**hole, but that’s for another story.

I know this the way I know I have to build in extra time in the morning and at night just for us to hug.

I also know things will have to change.

Part of me wants to keep you here with us until we can do it no longer, and I don’t say this as a martyr.

Part of me wants you to live apart from us to give your father and I some breathing space, and I don’t say this as a callous mother.

Part of me wants you to have some sort of job.

Part of me just wants you to have a life of leisure.

Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.

Part of me wonders who will snuggle with you and read you your bedtime story if I’m not there.

Part of me laughs at myself for these musings for everywhere I turn (except for Hawaii which seems to have fabulous adult services, aloha!) my options seem limited, to say the least.

Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us, so really the only questions are when and where.

Part of me just wants to know the future.

Part of me really doesn’t.

All of me wonders, time after time, how I will manage to give you a fulfilling life for 40 years from beyond the grave. Those “how” questions are a pox upon me.

As I accept the fact that none of this is an easy fix, all of me knows I love you and want for you the three things I’ve wished since your conception: for you to be safe, happy, and loved.

And all of me knows it’s complicated.

Image via Thinkstock.

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When My Son on the Autism Spectrum Asked If He Could Take Ballet Lessons

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Three years ago, when my son, Gavin, was diagnosed on the autism spectrum, we were advised to make a new road map for him. It was recommended that we move forward cautiously with our expectations of his growth. We needed to be aware that everything we had planned for him may or may not happen.

I watched friends post on social media about their children’s accomplishments with bittersweet emotions. Many of the posts were about children who were Gavin’s age or younger, but they were doing things he was nowhere close to achieving. I was obviously happy for my friends and their children, but my heart broke a little each time wondering when/if we would ever be able to share in those same milestones.

This week, I got to share in some of the events I thought might not ever happen. They were destinations I wrote off our road map three years ago. These events came later than I had originally planned, but the great thing is we just took a long detour.

On Wednesday, Gavin started his last year of preschool. This event was huge for a multitude of reasons. He was entering an inclusive environment instead of being in the autism sub-separate classroom. Secondly, we decided late this summer to move him from his school to one closer to our apartment, since he no longer needed the sub-separate room.

He was scared, as any child would be, entering a new school, but he asked my husband, Doug, and I if he was going to a new school because he was a “big boy.” What an amazing observation! Even Gavin was able to recognize his own growth and realized this new school was almost like a reward for his hard work.

Organized sports and activities were another area of our road map that I had deleted from our thoughts. I watched Gavin face challenges for years to listen to teachers, to play well with others and to follow directions for an extended period of time.

However, in late March, after Gavin switched classrooms, he was invited to a birthday party at a gymnastics center. The party focused on a ton of group activities and involved kids waiting their turn while they sat peacefully in a circle. I had been to these parties before when my daughter, Kendall, was younger, and to bring Gavin to similar one increased my anxiety level. I was sure he would not sit still, and I would be chasing him around the room the entire time. However, to my surprise, he was participating fully. He listened to everything the instructors asked the birthday guests to do. He waited his turn patiently and participated enthusiastically when it was his turn. I saw a new boy. A boy who was developing at his own pace and was finally ready to be involved in social activities.

Later this spring, Gavin joined me at one of Kendall’s ballet lessons. He leaned over halfway through and asked, “Next year, I do ballet?” I was shocked. This was the first time he expressed interest in a group activity that wasn’t school related. I leaned over and said, “Sure, Gavin. If you sit quietly through the rest of her lesson, you can do ballet in the fall.” I have never seen him sit so calmly before. He didn’t make a peep. He watched for the next 30 minutes in silence, and when the class ended, he leaned over and said, “Now I do ballet next year?” It was impossible to say no.

I was ecstatic to enroll Gavin in ballet, yet I knew we had one last huge step to get him there — the clothes. Even if Gavin wanted to be a dancer, I was concerned that he didn’t realize this meant he had to wear a certain outfit. After convincing him that he wouldn’t wear the same clothes as Kendall, he finally understood he needed a white shirt and black pants. I asked him to wear black shoes for class, but he insisted on white. I think it was the one way he felt like he had some control of the situation.

This Saturday, after a short struggle to get him dressed, we walked Gavin over to his first ballet class. He followed the directions as I would expect any 4-year-old would. He understood the directions, and in normal Gavin fashion, he spent the bulk of the lesson taking in the room and studying it so he knew where things belonged. All and all, he did great, and I know going forward he is only going to get better.

We are beyond proud of him not just for his ballet lesson, but for also wanting to be involved with other children.

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My Experience Making 'Normal People Scare Me Too'

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Making our film, “Normal People Scare Me Too,” with a cast and crew of autistic people was challenging, both during filming and editing. But when we finished our film in April, the rewards were worth it. We had about 75 percent of cast, crew, art, animation and music done by autistic people. Beyond the cast and crew, though, making our film as mother and son, was really hard at times — especially for me as an adult, and for my mom in the roles of both a director and a mother.

If you are a parent, you might relate to asking yourself this important question: “When do I back off, and when do I keep doing things in my kid’s life — especially when they are adults?” If you are like me, you might ask yourself this about your parent a lot! We had to deal with this question — over and over — for an entire year while making our film, and it was definitely not always easy. We know lots of parents around the world who work as their adult child’s “manager” to support and promote their futures and micro-enterprise-like businesses. This sometimes creates breakdowns and hopeful breakthroughs.

I worked on this article, at first by myself, and then side-by-side with my mom. When we made our first film, “Normal People Scare Me,” a decade ago, I was 15 years old. Today, I am 27 and live independently with supports. Mostly, these are my words with a bit of my mom’s suggestions to help me word things that are hard for me to get out. She asked me basic questions to help get me started.

Mom: Taylor, what motivated you to make this film?

Me: OK, I’m laughing at myself right now. I’m sitting in front of my laptop, inside of a Chipotle, finding it difficult to find the motivation to write an opening paragraph that’s almost all about motivation and how I sometimes have trouble with it. It’s laughably ironic.

Mom: Is that a common theme for you, trying to find motivation for things you want or need to do in your life?

Me: Yes, it can be very hard. It is often the process steps that confuse or stall me. What does any of this have to do with my experiences filming “Normal People Scare Me Too”? A lot. It’s about how I decided that I needed to get back on the proverbial horse so that I could lead a life that I’m more than happy with, and the journey it will take to get there, and the amount of effort it would take for me to get there.

I got involved with NSMP2 very early on in pre-production, when (you) asked me if I want to do the film. I accepted almost immediately. However, I was not heavily involved with the main production of the film behind the scenes. My primary responsibility during the film-making process of NPSM2 could be summed up fairly easily. I was essentially the lead actor who helped guide the other actors to better serve their parts on camera. I asked the questions that were in the script, and I went off-script to ask even more questions that were related to the people I interviewed. Some of the better recorded moments were even tangents that couldn’t be helped because they showed the struggles some people as a whole go through on a day-to-day basis, and that’s not even factoring in the autism. Those are the ones that I remember the most.

Mom: What were the highlights for you in the interviews you had with old and new cast members?

Me: For me, the things that I remember the most are some of the most emotionally intense in the film. However, they are intense for the same reason stated above, it’s just some of the struggles and horrors people go through every day. I remember those moments because they serve as a strong reminder that people will not believe that things are going to be OK just because someone says so, but because they will believe things are going to be OK because they want to get help, and will move their butts to obtain said help. Also, it makes the more inspirational moments shown in the film all the more special to me.

As an example, one of my childhood friends, Vince, got involved with wrestling — something he was passionate about since he was a kid. I was excited for him when he told me about that on camera. However, it also got me to think about where I was going in my life, because he showed that his passions have made him a much more emotionally healthy person. I wanted the same thing he had. So I re-evaluated everything about myself. My likes, my dislikes, and my overall skill set. That got me on the path to going back to school, getting job development, and the support needed to succeed at both.

There were also points where I got to chat with some of the people from the first NPSM, like Vince, Ben, Kyle, Rick and others who are now 10 years older and have gained more real world experience in between the two films. Some have become really cool people that I would totally hang out with if we lived in the same area code. With others, I just went and quickly put them in the “best kept as acquaintances” folder of my mind’s file cabinet. We all have those, you know.

Mom: What are you doing now to help you with motivation?

Me: I have new and better staff in place now. My current staff, James, who is employed to work with me through a program called FADE, is on the autism spectrum. He is close to my age, and he gets me. Last semester, he attended an English class with me at community college. After failing college classes in the past, I finally got my first B. That was highly motivating.

I have fallen down a lot since I made the first “Normal People Scare Me” film.  I graduated a Transitions to Independent Living (TIL) program through the ARC of Ventura County. Three years ago, I moved into my apartment supported by Social Security and support staff.  People often ask me why I can’t “just” follow through? Or say to me, “Taylor, if you would ‘just’…”  I seem capable, yet executive and administrative functioning are hard for me. Sometimes it is hard to say the right words or share my thoughts. It’s just hard to get them all out. Sometimes, when I am interviewed for my film work, though, I get my words out OK.

Mom: Sometimes you wanted to drop out of the film. Why was that?

Me: During the filming of “Normal People Scare Me Too” this past year, I almost dropped out of the project. I just didn’t know where I fit in to “Normal” and making my real dream of becoming a gaming reviewer happen. At one point I told you (Mom) and Joey Travolta (our producer) to just finish the film without me, because I felt no value to me in completing the project.

After I took some time to think about it and realized that I needed to form the skills that would be required of me to do what I really wanted to do, finishing this film made more sense to be a foundation for eventual goal of being a good writer. So here we are. Needless to say I completed the film because along the way I found inspiration among the people I interviewed in “Normal People Scare Me Too” to get back on the horse I mentioned so that I could lead a life I’m more than happy with and the journey it would take to get there. I am beginning to see I have to do many things that take a lot of effort if I want to reach my other goals.

Mom: What would you say to young autistic boys/girls, men/women about following their dreams?

Me: Well, now I feel motivated to go after what I truly want in life outside of this film (which was a lot of fun to do), and I will go to great lengths to get it. I hope that my thoughts on how “Normal People Scare Me Too” affected me on a personal level will inspire people to get either themselves or others to be motivated to live life to the fullest. Doing the hard thing eventually inspired me. It is not easy, but hey, who said life would be?

And now that the film is done, I look forward to speaking engagements and to sharing our film all over the world. And even though I like to travel with my mom to speak, if my staff, James can come, I would really like that.

About the Film:

A decade after the award-winning film “Normal People Scare Me” was released, Taylor Cross, the film’s co-creator, is at it again with “Normal People Scare Me Too.” In the new “Normal,” he interviews former and new cast members and family about attitudes and first-person perspectives about autism today.

Created by a film crew comprised of 75 percent autistic students and graduates of Joey Travolta’s Inclusion Films, with music and art created and performed by 65 percent autistic musicians/composers/artists, the new “Normal” is pleased to be a more inclusive production this time around. “Normal People Scare Me Too” is driven by Taylor Cross, directed and co-produced by Keri Bowers (Taylor’s mom,) and produced by Joey Travolta. Keri is the co-founder of The Art of Autism, a key supporter behind the scenes of the film, and has created four films about autism and other disabilities. The new “Normal” can be ordered through our website.

About Taylor and Keri:

Together, Taylor and Keri have worked on four documentary films together, including “Normal People Scare Me,” “The Sandwich Kid,” “ARTS,” and “Normal People Scare Me Too.” Their films have taken them all over the world to speak at conferences and facilitate workshops on transitions planning and person-centered practices. Using the arts as tools for interventions since Taylor was an infant — including music, drama, movement, art and film — Keri helped Taylor gain critical life and social skills, which have supported him to live independently as an adult. Keri is the co-founder of The Art of Autism, a sponsor of their new film.

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To the Strangers Who Stare as My Teenage Son With Autism Behaves 'Inappropriately' in Public

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Hello there, stranger.

Sometimes.

I see you staring at my son as he towers over me and squishes my cheeks over and over while I browse the organic produce. I see you wondering why I allow him to kiss me on the lips in public, and I feel your judgment when I don’t reprimand him for wearing the attitude that the two of you are equals, rather than him a 16-year-old boy and you an adult.

I see it, and I feel it, and I respond in my own way. 

If it feels appropriate, I’ll explain my reasons. If you ask outright about us I’m more than happy to tell you. I love to share and discover reasons! And if my son begins to squirm from the weight of your misinformation or judgment or misunderstanding or difference of opinion, I’ll explain to him. Maybe loud enough for you to hear if I feel that will help.

You see, I learned early that allowing my loved ones to be themselves is more important than teaching them to be who you expect. My brothers were all on the autism spectrum, and if my mom taught me or them to act only as expected then we may have all died of self-loathing by now. Instead she taught us to explore our interests and passions and to do so with such comfort that we are able to share who we are with those who may be curious. 

She taught us to be so comfortable with any strangeness that is truly us that we can’t help but want you to be comfortable, too. Rather than feel compelled to shove our difference in your face with anger or “I dare you to say something” attitude, we live and love and are ourselves comfortably.

I’ll admit I learned the value of fitting in and learning to care about the expectations of others a little bit later–and it’s true there is value there, too. With a willingness to hear the views of the many and to consider the comfort of the masses I have been able to teach my loved ones to keep an open mind and a flexible nature. Also, we’ve discovered tips and tricks for sharing our own passions more clearly and to a bigger audience. That is a lovely thing!

So, I learned caring about discovering my unique self and encouraging those I love to discover their unique selves, first. Later I learned to care also about your unique needs and ideas.

mom and son take a selfie

The two go well together, most of the time. And when I struggle to see how the pieces fit – our unique selves and your unique needs and ideas– I’ll always choose accepting myself and my loved ones first, over worrying about you. Not only because myself and my loved ones are more my responsibility, but because I am unable to guess correctly the expectations of you, a kindly stranger staring as my son purses his lips and makes animal sounds in the produce section. Also, I believe you have the ability to help yourself and need less from me than my loved ones do.

I see you staring as my son towers over me and squishes my cheeks, and I respond in my own way. I hope you’re open to my style of communication and are truly curious rather than assumptive. Communication – every kind of communication–is understood best that way.

I learned exploring unique and personal passions first, and finding how they fit with society later.

Want to know a secret? I think, honestly, that’s the best order.

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