The idea of a spectrum disorder is just now beginning to be understood by the general public. In general, people get the idea that a person can be a little diabetic or very diabetic. A little arthritic or very arthritic. A little depressed or profoundly depressed. But in all these cases, the symptoms are very similar; the differences relate more to the degree of the symptoms, and not to the symptoms themselves.
When it comes to autism, though, what does it mean to be "a little autistic" or "very autistic?"
I often find myself describing Asperger syndrome as "mildly autistic," just for simplicity's sake... but in fact the description isn't really appropriate. A person with Asperger syndrome may be high functioning (that is, verbal, bright, and capable of doing a great many things) - but that same person may have overwhelming anxiety, sensory issues or other symptoms that make ordinary activities painful or difficult in the extreme. Meanwhile, a person with a PDD-NOS or "moderately autistic" diagnosis may be lower functioning (less verbal, less academically successful, etc.) - yet find it relatively easy to manage day to day engagement in the world.
As I talk with community leaders about including people on the autism spectrum in classes, camps, and other programs, they very reasonably want to know what kinds of accomodations are appropriate. And I really do want to help. But the more I explain, the more confusing the explanation becomes.
Q: "Do people with autism need quiet, uncluttered space?"
A: "Sometimes."
Q: "Do people with autism need visuals to help them understand concepts?"
A: "Sometimes."
Q: "Do people with autism generally want to be part of a group or team?"
A: "Sometimes."
How do YOU describe the autism spectrum? Or do you just describe your child or yourself without worrying too much about the "A Word?"
Share your thoughts and suggestions!
I am endowed with Asperger’s.
For simplicity I will emphasize Aspies, but much of what I am to say applies to essential autism.
In any given family we can see several different personalities even in genetically related people. If there is that much disparity in a group which in theory should be similar, the disparity between unrelated people becomes so broad as to be impossible to describe.
Aspies will have a broad range of personalities and differences just as neurotypicals do. This makes it difficult to describe the differences in personalities and sensitivities.
Why attempt the nearly impossible? Instead describe the difference in the way the brain is wired, and let people logically infer how those difference will influence behavior.
We know from brain imaging that Aspies do not have mirror neurons, and that they do not have a unique sense of self.
It raises some eyebrows when neurotypicals anthropomorphize animals and attribute human-like emotions to them; the presumption being that humans should be able to “turn off” their instinct to read emotions and motives and relate those emotions to self. If you can grasp that conundrum, then try to grasp not reading emotions and motives and relating them to self when you look at another human. Ever.
Once that concept sinks in, the behavior commonly observed by autistics follows.
I suspect there are two kinds of guilt; one from failing one’s own standards, and one from perception of how other people perceive you. If you are intrinsically incapable of comprehending others’ thoughts, can you have guilt? How does lack of guilt affect behavior and discipline? Can you have guilt if you lack a sense of self?
If you have no sense of reading people’s emotions, is there any point in looking at a face? If someone speaks, is there any point in looking at anything other than the source of the noise- the mouth?
If an autistic child never looks at faces, is the child doomed to be like the blind child who has the sight miraculously restored as an adult, only to be chagrined to discover that without the visual cortex having created a template of a face as a toddler, that as an adult he will be face blind? How do you relate to a child for whom everyone is a stranger, every day? (My brother could not recognize my mother if she changed her hair style)
Have you ever reached your hand out to a cat to pet it, and seen the cat recoil? The cat cannot recognize faces. Reach your hand out in front of the cat slowly approach the nose, and the cat will sniff you and recognize you, and then permit you to pet it.
I cannot recognize voices, not even my own children.
Imagine living in a world where you identify neither faces nor voices. How would you relate to people?
Imagine taking a hundred coke bottles and giving each a unique feature such as a paper mustache or a green sticker and assigning each bottle a name. How many of the bottles would you be able to identify the next day?
In my mind remembering each of those coke bottles would be no different than trying to remember people, and no less daunting, but it is obvious to me that neurotypicals must use a different system to remember people. We hear anecdotes of shepherds or cowherds who can identify each animal under their care, while most of us see a uniform herd. Imagine seeing people as a uniform herd. Would you say hi? Would you be reciprocal? Would you trust individuals?
would you initiate conversations if you knew you would be teased or humiliated if the give and take of the conversation forced you to betray that you could not identify people around you, much less know the gossip?
What gives any member of the herd the right to walk up to you and without warning start controlling your life? Tell you what to do and where to go?
If there is no sense of self, of family, is wandering behavior unpredictable? Is a neighbor’s property or home any different?
The anecdotes about behavior follow what we know about the brain wiring (or lack of).
I must add that the brain scans cannot capture the all encompassing sensory problems which anecdotal evidence suggests many of us autists share.
This morning I took a bite of something cold and sour. The coldness startled me, and I jerked violently; an instant later the sourness hit me, and I jerked violently again. If I listen to a “mix” radio station and they add an unexpected sound to an old familiar recording, I startle violently!
I cannot determine from self analysis or the literature whether the heightened sensitivity is something “wired in”, or learned response from everything in the world around us autists being perceived to be a threat, 24/7/365. If you cannot read emotions, recognize people, understand motives, and have been punished by unidentified individuals, and had liberties restricted randomly, what threat matrix do you develop? Does it become a form of post traumatic disorder?
If you want to create a sensory environment an autist can tolerate, think in terms of each noise being perceived as a threat. Persistent noise being impossible to ignore. think of space (for me, the source of noise has to be at least five feet away to not startle me, and position and pitch are important; I theorize that my primitive brain is analyzing the distance and direction to the threat by the relative volume as the sound waves reach each ear, and with high pitch sounds it is impossible to perceive direction.) I am most relaxed when completely alone and isolated, but that is also when I am most vulnerable to startles so violent I can be injured.
Epilogue:
Smart Aspies eventually learn to recognize the most familiar faces. They learn emotions and motives by anthropology. Clever Aspies who truly grasp the concept of emotions in neurotypicals can learn to play them like keyboard instrument.
One cannot predict whether the enlightenment will occur at age three, age ten, age thirty or will never happen. (This is not hyperbole; I’ve witnessed all four)
Well, when you’re talking about actual medical conditions, you cant really include diabetes and arthritic to depression. However of the 3, and lets add autism and make it 4, it depends on how any are managed and treated and how debilitating it is to that persons every day life. I do have to say, I don’t know one person who thinks a person can be a little diabetic or very diabetic. You’re either a type one or you’re not and you either maintain your eating and insulin and if you don’t, you’re not more diabetic; you’re more at risk for other side effects of being a diabetic. Some people are depressed all the time, some are not however how it manifests for each person, just as autism, is as individual as each person.
You simply can not accurately describe autism as a general whole when it comes to those lists, other than saying ’sometimes’. Without knowing each individual with autism or asperger’s, a person could easily set up accommodations such as visuals; those who need them will use them, those who don’t wont. A quiet place should be available and if it’s not used, they can decide what to so with that space. As for cluttered uncluttered space, you wouldn’t clutter up a class room as an accommodation.
One of the biggest questions I would think is how to help the person to adapt to their surroundings. Another thing not often talked about is good days and bad, where the child/ person seemed to grasp this today, but the next day it’s as if they never grasped it at all. The autism spectrum really is widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behavior. To go beyond that, you’d have to do it at an individual bases.
I think one problem with describing autism – which you hit on – is that none of us is at one point in the spectrum at the same time and – as Sandy points out – tomorrow we may map differently again.
Perhaps the best we can do is to note what is more or less constant for us and then draw attention to variables. Thus my lack of social skills, my sensory and information processing problems, my digestion, my sense of the passage of time, my face blindness, my inability to dissemble etc are all constantly part of my make up but the extent to which they affect me at any time varies greatly.
Usually I’m describing things in context with trying to help people who are in contact with my son resolve some sort of “problem” they are having with him that they’ve brought to my attention and asked me for help. As a result, I most frequently am just describing my son. I still find I have to mention his diagnosis, because this seems to anchor the other person so they will at least consider what I’m saying. I also have to use his diagnosis to fill in various slots on various forms. I do find things generally work best, however, if I try to stay primarily focused on the individually specific issues and work with the other person to devise an individually specific solution.
Of course, there are some times when people do approach me with a “general” question out of the blue about autism. For these, I might invoke “the literature” and then work my way from there to basically just describing my son again. (saying something like… ‘X says that ….. and my son manifests that trait in this specifc way….). More of than not, these conversations work there way towards some specific person they had in their own mind when they asked the question… and then sometimes I just have to respond that I’m not a diagnostician.
Honestly, I think I try do the same thing with helping other people understand, for example, my mom’s arthritis issues or my friend’s difficulty with his diabetes, etc.
There is also the question of comorbid conditions. Our Aspie daughter shows some symptoms (called out by various therapists) of OCD and ADD so a mis-diagnosis is an issue. In addition certain physical problems that probably have a genetic basis are also troublesome. She has very poor body temperature regulation and overheats very easily. This makes accomodation on a job critical. We are aware of anomalies in her genome, but can’t relate any of them to any of her conditions. Hope continuing research into genetic components of autism will produce actionable results.
I’m sorry……………….you lost me in the comments. Now I don’t know where to turn. My brain can not comput all this information.
It is important to be able to point out the major symptoms of ASD then work towards the specifics with each individual. Aspergers/Autism manifests specific outcomes with individuals but there are usual attributes that run through the community.
When I discuss how Aspergers/HFA affects me with another person with ASD it is easy to understand what the other is conveying.
First and foremost –
Thank you, Bill, for your comment so well expressed. It brings insight that is mostly lacking in the dominant world of the “neurotypicals” that quickly disregards the beauty found in the entire spectrum range of human beings. Your enlightening answer will be treasured and passed on…
As to the specific question asked, “just describe your child or yourself without worrying too much about the ‘A Word’”
This I confidently state in retrospect, while our 25yr old navigates through life completely on his own now. He is currently working successfully on his PhD with 3 more years to go.
Did we flounder and zig-zag between preschool and H.S. You bet!!! Yet, to the best of our abilities and know-how, as we were learning along the path ourselves, we continued to provide every opportunity for learning and gaining independence through experience. This included city park programs and scouting, YMCA programs and summer camps, science camps and competitions, etiquette sessions and social groups, enrichment programs, learning therapies and tutoring, private schools and public schools. Although several H.S. educators questioned college competence as a realistic objective, we continued on our set path providing our son with a pre-college summer on campus living experience. This experience as well as the knowledge that there is help, if sought, at most universities alleviated our concern. Once our son left to attend an out-of-state university, his growing independence and maturity was exceedingly satisfying to observe from a distance. It took us a while longer to gain full confidence in his success. We are exceedingly proud of him now and wish him the best in life.
Along the way we have not looked for exceptions; we looked for inclusions and opportunities. Not all experiences were the best but all had something positive about them. Thus, our path, though not straight, worked for us. I hope all children benefit in the end by the paths that lead them to their successful futures.
For those readers who are still facing the unsure years, I have one message: DO NOT UNDERESTIMATE YOUR CHILDREN. They continue to develop, learn and grow in many different ways throughout their lives. The potential in all human beings is unpredictable. Do the best you are able to love and provide as many opportunities as possible. There are some limits that apply to all of us but there are also many exceptions to “professionally” given predictions. Never abandon hope…hope is the trust in the future.
@not a string… Thank you! We are currently experiencing that “floundering” feeling, and after a rough few days, it was wonderful to read your encouraging words. Best luck to your family, and to your son in his studies.
Autism — in varying degrees, of course — is a disintegration contraction, and detachment of being, experience, and consciousness
most important if you are raising a child with ASD and they are in school YOU AS PERSON raising this child w/autism Must be forever on your gard for child cause SCHOOL SYSTEM CAN TEAR ALL YOU WORK DOWN MY GRAND IN 2 HIS SCHOOL HAS ALMOST (MAIN-STREAM) DESTROYED ALL his progress.this teacher has sent my child to ISS TO DO HIS WORK BECAUSE HE TOLD TEACHER HE DIDN’T KNOW HOW TO DO SOMETHING LIKE PICK OUT NOUNS HE CAN TELL YOU BUT HE CAN’T PUT IT ON PAPER OR READ SO W,HELP HE CAN AND THAT GOES FOR ALL AREAS OF SCHOOL(ALL LESSONS )
The body is invisible and visible.
The vaccines are biologically active as disorder/damage/poisoning/toxicity to the self/bodily system. Are thoughts, feelings, and emotions visible?
Autism is a disintegration, contraction, and detachment of being, experience, consciousness, emotion, feeling, and thought. The vaccines are making us progressively unconscious and reactive in various and unpredictable ways.
Being, experience, and consciousness are becoming excessively (and increasingly) dream-like, unconscious, and inanimate.
There is an ongoing disintegration, contraction, and detachment of being, experience, and consciousness that is consistent with depression, autism SPECTRUM disorders, OBESITY, anxiety, etc.
The body is both invisible and visible. Are thoughts, feelings, and emotions visible?
Autism involves a progressive and ongoing disintegration, contraction, and detachment of being, experience, consciousness, thought, feeling, and emotion.