Posted on March 30, 2021
Given how much I love quotes, I thought this week would be a good opportunity to share a compilation of quotes specifically about Autism and from autistic individuals…
“If you’ve met one person with autism, you’ve met one person with autism.” – Dr. Stephen Shore
“English is my 2nd language. Autism is my first.” – Dani Bowman
“My autism is the reason I’m in college and successful. It’s the reason I’m good in math and science. It’s the reason I care.” – Jacob Barnett, sixteen-year old math and physics prodigy
“Think of it: a disability is usually defined in terms of what is missing… But autism… is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.” – Paul Collins, Not Even Wrong: Adventures in Autism
“I don’t really understand why it’s considered normal to stare at someone’s eyeballs.” – John Elder Robison
“Our experiences are all unique. Regardless, I do believe that it is important to find the beautiful. Recognize that there is bad, there is ugly, there is disrespect, there is ignorance, and there are meltdowns. Those things are inevitable. But there is also good.” – Erin McKinney
“Autism is as much a part of humanity as is the capacity to dream.” – Kathleen Seidel
“By holding the highest vision for your child when they can not see it for themselves, you are lifting them up, elevating them and helping them to soar.” – Megan Koufos
“Autism… offers a chance for us to glimpse an awe-filled vision of the world that might otherwise pass us by.” – Dr. Colin Zimbleman, Ph.D.
“My autism makes things shine. Sometimes I think it is amazing but sometimes it is sad when I want to be the same and talk the same and I fail. Playing the piano makes me very happy. Playing Beethoven is like your feelings – all of them – exploding.” – Mikey Allcock, 16-year-old who was non-verbal until age 10
“Vibrant waves of sequenced patterns emerged in my head whenever I looked at musical notes and scores. Like pieces of a mysterious puzzle solved, it was natural for me to see music and its many facets as pictures in my head. It never occurred to me that others couldn’t see what I saw.” – Dr. Stephen Shore
“We contain the shapes of trees and the movement of rivers and stars within us.” – Patrick Jasper Lee, an autistic synaesthete
“I looked up to the stars and wondered which one I was from.” – James McCue
“I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life.” – Tony Attwood
“My mind doesn’t stop; it spins and shifts in different directions creating webs of patterns, linked by varying hues.” – Michael Bowring
“Stop thinking about normal… You don’t have a big enough imagination for what your child can become.” – Johnny Seitz, autistic performance artist
“Rome was not built on the first day. I need time to build the Eiffel Tower of my life.” – Jeremy Sicile-Kira
“As an autistic, I can readily see environmental phenomena of sun particles interacting with moisture in the air and rising up from the ground. I thought of these things I could see as sun sparkles and world tails.” – Judy Endow, Painted Words: Aspects of Autism Translated
“Low pitched notes really make me feel like love might be truly possible. High pitched notes make me feel like I could go crazy with pain and sadness. Great rhythms can make me feel like life is freedom.” – Jeremy Sicile-Kira
“You are not in the mountains, the mountains are in you.” – John Muir
“Our wounds and hurts and fears are in our eyes. Humans think they build ‘walls’ for internal privacy. They think eye contact is about honesty but they mostly lie because they think they can hide their intent. Eye contact is invasive.” – Carol Ann Edscorn
“My fear is that if I don’t mask, push through and show how capable I am, I won’t be offered opportunities in the future or be valued the same.” – Emily Swiatek
“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” – Paul Collins
“As soon as a child is capable of understanding, they will know they are different. Just as a diabetic needs insulin, an autistic child needs accommodations. The label gave me knowledge and self-awareness.” – Steve Andrews
“No, autism is not a ‘gift.’ For most, it is an endless fight against schools, workplaces and bullies. But, under the right circumstances, given the right adjustments, it CAN be a superpower.” – Greta Thunberg
“To measure the success of our societies, we should examine how well those with different abilities, including persons with autism, are integrated as full and valued members.” – Ban Ki-Moon, Former United Nations Secretary-General
“No matter how hard I try to learn from other people or copy what others are doing, I can’t quite get it right. It’s like living in a foreign country and not knowing the language.” – Rosie King
“Routine is a pivotal part of my daily life and any deviation, however slight, can cause great discomfort to me.” – Nathan Cornfield
“Avoiding eye contact is one of the things I find myself automatically doing to minimize the quantity of incoming sensory information.” – Judy Endow
“Autism doesn’t have to define a person. Artists with autism are like anyone else: they define themselves through hard work and individuality.” – Adrienne Bailon
“Autism is like a rainbow. It has a bright side and a darker side. But every shade is important and beautiful.” – Rosie Tennant Doran
“I don’t want my thoughts to die with me, I want to have done something. I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution – to know that my life has meaning.” – Temple Grandin
“I’ve listened enough. It’s time for me to speak, however it may sound. Through an electronic device, my hands, or my mouth. Now it’s your time to listen. Are you ready?” – Neal Katz, Self-advocate
I really enjoyed putting this post together. Or more accurately, putting this blog post together was a very emotional process, with emotions from both ends of the spectrum (no pun intended). It was really positive and also deeply affecting. Some of these quotes hit so close to home that reading them brought tears to my eyes; some of them resonated with me in a way that was deeply inspiring and comforting. Doing this has actually made me feel less alone and more able to understand and express how I feel, something that I already felt like I was pretty good at. So that wasn’t something I expected.
Whether you were as moved by these quotes as I was or not, I hope you found something in this post that spoke to you, that helped you, or that even just made you feel something. Expressing ourselves can be so difficult; sometimes we need a bit of help and sometimes that help can come in the form of the words of others.
Category: autism, quotes Tagged: actuallyautistic, asd, autism, autism awareness, autism awareness week, autism awareness week 2021, autism quotes, autism resources, autism spectrum disorder, autistic, autistic adult, quotes, waaw, waaw 2021, world autism awareness week, world autism awareness week 2021
Posted on March 29, 2021
And World Autism Awareness Week is here again!
Over this week, I’ll be sharing a series of posts focussed on Autism and my experiences with it, as well as resources from various organisations that may be useful for those of you who are autistic or support someone who is autistic.
Here are some great organisations that provide support and/or information:
On this blog, I’ve written multiple posts about or including various aspects of my experience with Autism and so, to begin this week, I thought I’d collate them in one post so that they’re easily accessible…
I hope this post is an interesting and useful start to the week and I look forward to sharing the rest of the posts I have planned for this week in the coming days. I hope you’re all staying safe and looking out for each other!
Posted on March 21, 2021
A couple of months ago, I was diagnosed with ADHD. It was something I’d been thinking about investigating for a while but with COVID and the lockdowns, it was just something that got pushed to the back on my mind; I was busy trying to deal with my anxiety and depression. But then the opportunity to have an assessment came up unexpectedly and I decided to take it.
At the end of my hypermobility assessment, we were really just making conversation and the appointment was drawing to a close when I mentioned something offhandedly (I can’t even remember what now) and the specialist commented that she had worked with multiple individuals with ADHD who had similar experiences. I decided to bite the bullet and so I told her that I had done some research into the combination of ASD and ADHD and that I’d been thinking about whether I should be assessed. She said she could arrange that for me, which was more than a bit shocking: I’m so used to having to fight like hell for people to give me that sort of opportunity. So I took it gratefully and to my complete and utter surprise, I received a letter later that week with an appointment date in less than a month. I was expecting months of waiting. And it was also with the same specialist so that was reassuring since consistency is helpful for me, as someone with ASD.
In the time before the assessment, I was sent a handful of questionnaires used when diagnosing ADHD, which I filled out, but it was clear that they were old: aimed at children and the stereotypical presentation (they were old: I searched them and when they’d been created). But I filled them in anyway and we sent them back in preparation for the assessment.
I also did a load of research into ADHD in adult women (more extensive than I’d previously done). I collected articles, personal essays, blog posts, and anecdotes from social media that I related to or felt were relevant to my life, and compiled them into a document. It was a LONG document. That done, we emailed it to her, although it was so close to the assessment that I wasn’t sure whether she’d have time to read it before she saw me. I still thought it was worth sending and when we spoke, she did too.
When the assessment rolled around, I was nervous. I’ve had enough bad experiences at this point to at least be apprehensive before these things. But already knowing the specialist was helpful and she was really good. She hadn’t had a chance to read the document I’d sent but promised she would before making any decisions about a diagnosis. Then she spent about an hour asking me and my Mum (who was also present for emotional support and information about my childhood) lots of questions, the majority of them about my childhood, my experiences at school, and typical ADHD symptoms. Some of the questions were quite stereotypical but having said that, she was incredibly knowledgable and very aware of the fact that there are different presentations of ADHD, as well as how different everything can be when you have ASD in the mix as well. So even though she obviously had to ask the conventional questions, she did tailor her approach to fit my circumstances, which, of course, gave her a much more accurate picture of what I was dealing with and how I’ve been struggling.
After an hour – at the mid point of the assessment – she suggested we take a break: to move, have a drink, etc. But as soon as I tried to move, I got the blinding, electric shock like pain in my leg that I’ve been getting on and off since the first lockdown. It’s excruciating and nothing helps it; I just have to try to remember to breathe and wait until it fades. This can take from a few minutes to almost an hour and I’m always exhausted after so when the break ended and the specialist rejoined the online call, Mum told her what was happening (she was already aware that it was something I was having to manage since it had come up in the hypermobility assessment) and between them, they rescheduled the second hour of the assessment for a later date. I doubt I could have kept going but it was frustrating to slam the breaks on halfway through a process like that and then have to wait almost two months to continue. Having begun, I just wanted to get on with it and get an answer, one way or the other.
But when the second appointment finally rolled around, I wasn’t sure whether I was relieved or nervous. But again, the specialist was great. She’d read all of my research and she asked me a few more questions based on certain things I’d included or commented on. Then she moved on to her observations and her conclusions, based on the original questionnaires, the questions she’d asked me, and my research. She said that, because of the overlap between ASD and ADHD, it can be very tricky to determine which symptoms ‘belong’ to which condition but having said that, she felt that I did display enough symptoms and the impairment caused by those symptoms to diagnose me with ADHD Inattentive Type. And that’s that. Except, of course, it isn’t. But it is an explanation and it does point in the direction of potential help and support.
Initially it was pretty overwhelming; for some reason I found it really hard to process. I had to just sit with it for a bit – let the dust settle – and then, after a while, it just felt less intense. I could think about it without feeling overwhelmed by it. But, even though I had been wondering about it before the assessment, it’s still very new and I’m still learning about what this means for me and how I move forward.
So now I’m investigating various options in terms of support. Apparently group therapy is a commonly used method of supporting individuals with ADHD but, of course, that’s not possible at this moment in time. The specialist told me that the NHS are currently building an online hub of resources but, as far as I know, that’s not been published yet. I’m fortunate to already have a very good therapist so I feel well supported there.
That just leaves medication. Unfortunately, I can’t take the classic ADHD medications with my current antidepressant because they both potentially cause high blood pressure, which could be dangerous. There are other ADHD medications that I could take but they all appear likely to have a sedating effect, and with the sedation I already struggle with due to the Phenelzine, that just feels unbearable. I can barely get through the day without two Red Bulls and caffeine pills. I can’t imagine what it would be like if I was even more sleepy; I’m not even sure if I’d be functional. So that’s not really an option. I’ve been doing some research, talking to the various medical professionals involved, and thinking about it a lot. I’m still not sure what’s going to happen next but I’ll work it out. I just need to be patient and keep looking through the kaleidoscope; I have to believe that, at some point, the bigger picture will become clear.
Category: about me, anxiety, autism, covid-19 pandemic, depression, diagnosis, emotions, identity, medication, mental health, treatment Tagged: adhd, adhd diagnosis, adhd support, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autismadhd, autistic, autistic adult, diagnosis, diagnostic process, inattentive type, mental health treatment, treatment

Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.
Finding Hope