I received some questions this morning from a mother whose son with autism didn’t want to be called “high-functioning” and suggested she use another term.
She asked me if I’ve ever felt this way – is it possible many kids feel this way and we don’t know it? and what other terms can she use to describe her son? I gave her the following response and I hope you will share it in an effort to remove harmful labels like “low-functioning” and “high-functioning” from our young people:
“Thank you for your questions. They’re relevant and do come up in the autism community more often than not and here’s why.
As you know, autism is a spectrum disorder and sometimes people associate one end of the spectrum as “high-functioning” and the other as “low-functioning.” This is somewhat offensive and risky for a number of reasons including but not limited to:
Using the term “high-functioning” discounts or dismisses the person’s needs or struggles. Plus, they may not see themselves as “high-functioning” when inside they feel like they’ve failed with respect to their needs and struggles. Furthermore, telling someone they’re “high-functioning” may cause them to resist help or feel like they don’t need it at all when really they could use some help.
Using the term “low-functioning” discounts or dismisses a person’s strengths and capabilities. It’s both shocking and disturbing how many people call their child this term IN FRONT OF THE CHILD. Then, the child becomes depressed and is rendered powerless (also known as “learned helplessness”). This results in a self-fulfilling prophecy when parents or others say things along the lines of “My son/daughter will never live on his/her own” and then years later, that’s exactly what happens. Underestimating a child’s potential hurts BOTH the child and the adult(s) that made the terrible assumption.
I had been deemed “high-functioning” and when I started college, I thought I was on my own, that I had to be completely independent and that I didn’t need nor have to ask for help. It turns out that asking for accommodations for tests in college, seeking help on improving my reading comprehension and getting assistance when I needed it would improve my college and overall adult experience. I realized it was OK to need help and ask for it and that I wasn’t stupid if I did so…I was stupid if I DIDN’T ask questions or seek clarification. Heck, even Einstein (who is believed to have had autism) asked questions!
As for another term for high-functioning, I suggest, just to name a few:
I say that last one “insightful” because I get the sense that he may sense that your words might offend others more than they offend him. He may also be very humble…not taking (or giving?) compliments or praise and might be embarrassed when his strengths and/or opportunities for improvement are pointed out.
I hope this information wasn’t too much and is helpful to you and your son. I’m happy to answer other questions you may have.”
Tom Iland’s achievements include graduating from Cal State University Northridge, becoming a Certified Public Accountant, and working in corporate America. Tom is now pursuing a professional career as a speaker and trainer sharing insights and practical advice with the Autism community. His new book Come to Life: A Guide to Transition to Adulthood (co-authored with Emily Iland) will be released this November. Tom is a Board member for the Art of Autism nonprofit. to find out more about Tom visit his website – www.thomasiland.com. Tom’s new book ‘Come to Life! Your Guide to Self-Discovery’ (co-authored with Emily Iland) is now available to the public!
A young soul can balance her lifestyle into a muse. She can have that vibe shine over her pure strength. Letting herself think more about the usual things. It’s the kind of life that shall take things into her own hands, she shall take some demands on the lifestyle that she’s given.
In her very own point of perspective she can create something that shall open up that empowerment. That pure empowerment can make it more like a perfect beginning to arrive at her shine through that very moment. She can believe in that genuine self. Feeling like there’s some creativity going around. Nothing can allow that creativity shine through so many things.
The thoughts in her head can let everything out of her in a more creative manner. Experiencing it as something a lot more beautiful than ever. True beauty can form her at any minute. Putting some confidence…
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I always knew I was different but never understood why. I aimed to please, but the world was too fast, noisy, unpredictable and innately counter-intuitive. Yet I was told by family and professionals in more ways than one that I was wrong – I was the problem. And I was told that I ‘would always be alone if I did not change.’
“Change how?” I wondered.
And so without the knowledge or communication skills to explain my daily pain confusion, fears and beliefs, I felt forever unloved, incompetent and very much alone.
Nevertheless, ‘stubborn’ to my core, giving up has never been a part of my DNA no matter how I flounder.
Fast forward thirty years, I began a new job as a home educator, hired specifically to work with a young boy professionals suspected of having Asperger syndrome.
Having never heard of the condition, I attended a conference to gain specific knowledge needed to help my new charge.
Imagine my surprise when the instructor began talking and essentially narrated my life story without ever having met me. He knew and understood things about myself that I could never explain or understand. He validated my very existence and negated the opinions and attitudes about me that I had believed for so long. In essence he gave me a new chance at life; he gave me hope that maybe, just maybe I am not as dense, difficult and unlikeable as most believe me to be?
After the presentation, I approached the gentlemanly speaker to seek his counsel. And though I am generally unemotional, my dam burst as uncontrollable tears reigned forth. Experienced and kind, he listened to my story, validated my thoughts and encouraged me to learn more and pursue a professional diagnosis.
Thus after nine years of further research and one demeaning mishap with a psychologist arrogantly unaware and unconcerned about the female expression of autism, I flew from Michigan to Oregon upon the recommendation of Dr. Tony Attwood, to meet with a professional who specializes in females and adults on the autism spectrum.
After many meetings with my mother and myself, Dr. Karen McKibbin presented us with her diagnostic findings, and in 2009 at the age of thirty-nine, I was deemed a full-fledged aspie.
Relief, validation, shame and letdown followed.
‘What do I do now?’ I wondered and slowly came to realize that while my diagnosis did not physically or immediately change anything, I gradually continued to learn how to make better decisions for myself; to value my strengths, accept and work on my weak points and understand that my deeply rooted shame is displaced, irrelevant; and that moving forward positively is what matters most.
So onward I charged as best as I could figure while continuing to learn more about autism and myself upon which I stumbled onto the opportunity to share my autism experience with a focus on females and adults as we are so often missed often spending a lifetime struggling by ourselves without any help or support.
If I could help even one person I decided, it would be worth my time and effort, so under the tutelage of my wonderful publishers at Pacelli Publishing, I wrote my first book Six-Word Lessons on Female Asperger Syndrome: 100 Lessons to Understand and Support Girls and Women with Asperger’s.
The level of interest, support and positive response continues to floor me, but oh how grateful I am and always will be and am inspired to continue to do more to not only spread awareness but to promote genuine understanding while continuing to help others.
Thank you for making the time to read my story, consider my work and help others.
Knowledge is power – something my family and I were at a loss without. Please help me to improve the lives of others, one read, one share at a time.
Tracey Cohen, a lifelong competitive runner, author, speaker and Returned Peace Corps Volunteer, was diagnosed with Asperger syndrome at the age of thirty-nine. Sharing her own struggles and discoveries, she aims to empower others to learn, accept and find peace in an ever complicated neurotypical world. Tracey lives in Farmington Hills, Michigan with her treasured Labrador Retriever, Bailey Kennedy.
Tracey is also a facilitator at Oakland University Center for Autism Outreach Services (OUCARES) and author of Six Word Lessons on the Sport of Running. She can be contacted at http://www.growingupautistic.com/tracey and firstname.lastname@example.org
Image: A cute cartoon elephant blows colourful shapes out of their trunk. Image courtesy of https://www.mission-of-saint-thorlak.com/mission-activities/missionary-thought-for-the-week-of-september-24-2018-everything-but-the-elephant#comments
When I sat down at last to write Saint Thorlak’s story, I had a tote bag bulging with research and solid sources to keep me grounded. I found enough background to shade the existing factual dot-to-dot image of the historical man with the depth and emotion that the academic works lack, and I had the entire body of blog posts to help characterize his spirituality. As I set forth corraling it all into paragraphs and pages, I saw that everything was carefully accounted for: the physical setting, the chronological timeline, the social context…
Everything but the elephant.
That is to say, the elephant in the room. The one asking if I, the head writer for the Mission of Saint Thorlak, would get through the entire story without mentioning AUTISM.
Autism is quite the elephant, indeed, wherever it shows up. To deny it is folly. To ignore it is detrimental to everyone involved. And to indulge it is to risk obstructing our ability to see anything else.
To mention “autism” in a story of a twelfth century cleric would be about the same as bringing an actual elephant to Iceland in any period of time.
What wonder, what scurry of activity, what sensational novelty it would be to bring an elephant to Iceland without preparation or prior announcement. The elephant would get all the attention, and the person tending it would be largely overlooked.
So, what, then – leave the elephant out?
As one who sees autism in Saint Thorlak, and is so deeply impressed with how it both permeates and refines his ministry as to devote my free time writing for an online apostolate in his name, I cannot fathom doing that.
Yet, nobody prior to me has referenced autism with respect to Saint Thorlak. The word appears in no source material. People have outright said they are very uncomfortable calling Saint Thorlak autistic because it feels like violating or exploiting his vulnerability. Of course I see that, and empathize greatly. I do not want people exploiting me, or my autism, or my eye color, or anything else, for their gain without consulting me first.
Then again, the Catholic saints fall into a special category of people whose lives we are explicitly encouraged to study and emulate. The vulnerability of the saints is what makes them most human, most relatable, most powerful in teaching us the ways we also can rise above life’s obstacles by reaching for the supernatural grace wrought through seeking, self-sacrifice, humility and radical acceptance.
Would Saint Thorlak have been diagnosed autistic if that term was around in his time?
Would Saint Thorlak have embraced that diagnosis if he had been given it?
We have no way to know either.
Besides being a writer, I am also a certified school psychologist. I have the qualifications to make diagnoses. It is the same process for a tangible person as it is a figure from long ago: it requires gathering data and synthesizing a person’s story. The data I use in school diagnostics consists of social histories gathered by parents and teachers, and observations of the student in the school environment. There are also interviews and checklists given in dialog with the students themselves. The psychologist takes it all into consideration and makes a decision based on the likelihood that the patterns match.
I can say with confidence that I have done this with Saint Thorlak – even more thoroughly than I have ever done with any students I have helped. Professionally, he fits the pattern. Professionally, I conclude he is a man who had autism.
But, in writing his biography, I can say with equal confidence that nobody in his lifetime knew what autism was or might be. It comes down, then, to the voice I choose to tell his story. Will it be a universal narrator, journeying with him through his twelfth century life… or will it be me, now, teaching and explaining each frame of the filmstrip?
Much as I would enjoy the latter, the result would be one more academic work… and one more missed opportunity to know Saint Thorlak simply for who he is, as a person.
The world does not need another autism case study. Nor does the world need another static image of Saint Thorlak, even if this one were to be accompanied by a brand new set of encyclopedic facts.
The world needs Saint Thorlak. The person.
And so, I wrote the story of Saint Thorlak, the person.
As for the elephant, after much prayer, I realized that it is perfectly sound to mention his autism in the book’s title and let his life’s story do the telling of his autism for itself. In a time when there was no such word, a person with autism would be… a person.
And I have striven to tell it exactly like that.
Continued next week.
Pray: Dear God: You have known my story from the very beginning. May my story as a person bless those who know me, and those who will come to know me.
Contemplate: How is knowing someone’s story different from knowing facts about them?
Relate: Take the time this week to better know someone through their story as a person.
I was in the supermarket the other day and was having a short conversation with myself around the choice I needed to make about a product that I don’t usually buy. A person must have heard my quiet discussion with myself. They gave me that ‘You are really weird and I don’t like it’ look. Funny, because I don’t usually understand facial expressions but I have seen that one so many times I am all over it! It is odd what causes people to judge. I suppose I didn’t fit this person’s view of how I ‘should’ act and so they passed a quick judgement about me. This is a problem beyond rudeness in supermarkets sadly.
People make judgements based on limited information about a person all the time. Everyone does this. I think it may be related to earlier generations of humanity and people encountering a new person needing…
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