Posted on March 31, 2021
Since this is my blog, the experiences are predominately from my point of view but I thought it would be really useful, as well as interesting, to get a different perspective on the same scenario. So, with that in mind plus the fact that most resources are aimed at the parents of young autistic children, I asked my Mum if I could interview her about what it’s like to be the parent and often advocate for a young adult with Autism Spectrum Disorder. I came up with a list of questions and she answered them. I had almost no input on her answers, only to ask for more information or detail if I thought she hadn’t fully answered the question or finished a thought. We’re hopeful that this could be of some help to parents with adult children managing a form of Autism.
I’ve talked about what it was like for me to get a late diagnosis but what was that experience like for you?
The process of getting a diagnosis for you was frustrating at best and distressing at worst. You were very clear about your need to know the causes of your difficulties and so refusal from medical professionals to engage with that need was hard to witness. I needed to do the research, follow up possible assessments and/or therapies and talk about your challenges against a backdrop of suspicion of being overprotective and a distrust of my motives. Even when it became clear that your inability to talk for yourself at the outset was a result of Selective Mutism and your experience with those professionals, I was still met with a resistance to engage with me on your behalf.
Although I’m more able to speak for myself now, what has it been like having to do so much advocating for me?
It always felt like it was my role to do this until you were able to do it for yourself. I wasn’t trying to fix things, just get your voice heard, your experience understood so that the problems you were facing could be addressed and the right support provided.
I knew all the answers to questions you were being asked because we’d talked about it all beforehand. Both before and after your diagnosis, it has just felt like I can be the means to you being heard and hopefully understood as and when you are not able to do it yourself.
As in your first question, this doesn’t always work! And I do often feel frustrated by a refusal to accept my intentions, confusing it with a reluctance to ‘allow’ you to speak for yourself/become independent.
Knowing me but having an outside perspective, what would you consider to be the positives and negatives of having Autism Spectrum Disorder?
This is really difficult for me as all I see is YOU, with all your qualities and all your challenges. Combine this with the fact that each person with ASD presents so differently and I do find it difficult to generalise. Understanding more about women on the spectrum now, I see your very singular focus on anything you set out to do as a positive. I think your intense empathy is a double bind, giving you a compassion that can then often be overwhelming. The biggest negative I see is your level of anxiety. This is often debilitating and always massively exhausting and affects most aspects of your life.
How do you think things would’ve been different if my ASD had been recognised when I was younger?
This is a little easier to answer as I think, from all I see now, knowing about it earlier may have enabled us to access support for you and given you access to specialist resources. Having said that, I wonder if a diagnosis earlier might have ended up giving you a label that meant expectations, both your own and society’s, may have been different for you. Increased awareness of and understanding surrounding neurodiversity is relatively recent.
What do you think is the most important skill or trait when it comes to parenting a young adult with ASD?
This question makes me want to ask you what you feel has been most important but my sense is that being there for you, trying to put aside any preconceptions and opinions of my own so that I am able to really listen and hear what you are telling me, leave aside any of my own anxieties or fears, to support and encourage you to do what you want to do; a combination of protection when things are tough and support to push forward when you feel able.
I also feel it has been important to be prepared to read and research for myself and learn all about the condition so I can share this whenever it feels necessary to inform the argument for support. And to be prepared to persist when first attempts are met with a negative response.
I’ve often talked about feeling like a burden for not moving out or contributing more as a young adult. What are your thoughts on this?
In answering this, I would like to reference a quote here, which I think explains how I feel about this. I found this during one of my searches and thought it was a positive recognition of the difference I see and how it affects your life in the sense of the ‘what’ and ‘how’ you contribute and participate. Keri Opai, a Mental Health Service Award Winner in New Zealand, consulted the Maori disabled community in order to develop variants in language that differ from what he called the “sometimes condescending English terms,” and instead emphasised the ‘gaining [of] strength and ability.’ So the word for ‘disabled’ itself is ‘whaikaha,’ which means to “have strength or to be differently able.” He also spoke of people with autism having ‘their own timing, spacing, pacing and life-rhythm’ and so interpreted autism as ‘takiwatanga,’ meaning ‘in his or her own time and space.’ (Te Reo Hapai, the Language of Enrichment by Keri Opai)
I do understand that you feel this way though but I know that you do what you can when you can, and that this inevitably fluctuates according to what you have going on at any particular time. With the anxiety and fatigue you experience on a daily basis, and your focus being studying at the moment, it just doesn’t make sense that you do more than you are able to, nor that you would move out to live independently, with all the extra demands that would make on you, yet. There is plenty of time ahead for that. Until then, I get to enjoy your company and give you the support you need.
I’ve been taking various medications and going to different forms of therapy for years now. What do you think have been the effects of those, positive and negative?
I have always felt that it would be a combination of therapy and medication that would be likely to be the best way forward, and I think we both agree now that this has been the case. It was challenging to find a therapist that you felt able to work with but once we did, we knew instantly that you could start moving forward, in your own time and in whatever way felt possible, something your therapist has always supported.
Regarding medications, I do have concerns about their effects on you physically as well as mentally and appreciate that living together does mean I can help monitor these effects and see patterns and changes that maybe you can’t.
What do you think the hardest part of living with ASD is?
Again, looking at you, I would say that the hardest part for you, of living with ASD, is the sense of feeling different and feeling left behind your peers; and watching you being so exhausted by managing the mental health issues that have troubled you as a result of the late diagnosis.
Do you feel your life is different because I’m autistic?
Yes, my life is different to what I had expected it would be at this point, but then so is yours. But we deal with that, and make it the best we can, for both of us.
What has been or is the hardest part of parenting a young adult with ASD?
I have often felt very isolated, and criticised for continuing to be your voice when you are not able to speak. And I do worry about the barriers you may face in a world that does not always recognise the assets and abilities of neurodiverse people, expecting autistic people to change rather than have society change the many inhospitable or incompatible environments and expectations that may hinder them.
What help/advice would have been helpful to you at any point?
All the way through… someone willing to believe in my intentions and acknowledge that, I, as a parent, only have your best interests at the core of everything I do.
So hopefully her responses to these questions have been helpful or reassuring to the parents among you guys. During this process, she actually realised that she had questions for me so we decided to do the same thing in reverse and that post will be up tomorrow!
Category: about me, anxiety, autism, diagnosis, medication, mental health, quotes, response, therapy, treatment Tagged: advocate, anxiety, asd, autism, autism awareness, autism diagnosis, autism in girls, autism in women, autism resources, autism spectrum, autism spectrum disorder, autistic, autistic adult, diagnosis, disability, disabled, empathy, fatigue, focus, independence, interview, invisible disability, keri opai, late diagnosis, maori, medication, mental health, mental illness, mother, mum, negatives of autism, neurodiverse, neurodiversity, parenting, parenting autism, positives of autism, selective mutism, therapy, treatment, university
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!
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.