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When Autism Is "Mild" or "Severe"

By February 2, 2011

Autism is a spectrum disorder.

What that means is that people with autism can be very, very different from one another - and still, quite legitimately, have autism spectrum diagnoses.

There are people on the autism spectrum who can't speak, write, or use the toilet.  They may be self-abusive or aggressive to others, and quite genuinely dangerous to live with.

There are people on the autism spectrum who are brilliant public speakers and authors, who travel the world as the honored guests of major universities and international associations.

The reality is that, while everyone on the autism spectrum does share challenges in social communication, those at the mild end and those at the severe end really have very little else in common.

A "spectrum diagnosis" is hard to describe, hard to write about, and - sometimes - hard to explain.   How do you tell a teacher who's only worked with severely autistic children that your child with Asperger syndrome needs less accommodation and more academic challenges?  How do you explain to your parents that, yes, Temple Grandin is autistic - but that doesn't mean their severely autistic grandchild is going to grow out of autism and become a Ph.D.?

Just as challenging is finding a place in the "autism community."   For parents, it can be quite daunting to find a support group that really fits.  If your child is "severe," listening to complaints about college prep can be frustrating and downright depressing.  If your child is "mild," you're not likely to learn much from a conversation about life skill classes or residential schools.  It's actually possible for parents to argue over whether a particular child has "real" autism - even when a "real" diagnosis has been made.  In some areas, autism support groups actually split into "high functioning" (orAspergers) groups and "autism" groups - and many parents and adults with autism find such a separation very helpful.

As a writer, I make a point of writing about both mild and severe autism - bearing in mind that even when communications issues are milder, other issues, such as social anxiety or sensory dysfunction, may be quite overwhelming.

As a reader, do you look specifically for articles about "mild" or "severe" autism?  Do you only pick out articles that specifically address your child's diagnosis?  How do you cope with the reality that autism is such a vast spectrum?




Comments
February 3, 2011 at 2:49 am
(1) Malia says:

While I’m probably most interested in articles that describe situations I can apply directly to my son’s individual diagnosis, I also find myself reading in order to find additional information in order to help acquaintances whose children are either more severe or less severe than my son. I think people advocating for rights or facilities or programs have to be ever cognizant of both ends of the spectrum and work towards understanding how advancing something exclusively for one end may adversely affect people on the other end… and then try to derive at equitable compromise positions.

For example… There are specific situations where it is most likely that the less affected end of the spectrum are more able to just suck it up and adapt without supports than those on the more severe end of the spectrum (Similar to how the wealthy of society are in a better position to pay into social programs that help the poor than the poor themselves). If spokespersons who are themselves on the HF end of the spectrum claim to “speak for” everyone with autism without considering the differing needs of people on the LF end of the spectrum, they leave an impression in general populace that there is no need for things like daily care programs… and then those people who do need them find that such programs never “got approved” because too many people in the general populace believed they weren’t needed.

Conversely, if people/organizations (in the interests of raising sympathy and charity for autism causes) continually “overplay” the “most needy” cases in the media (as has also been the “trend” with various charitable causes for generations)… they create an impression with the general populace that all people with autism are incapable. This can impede high functioning individuals from doing things like finding jobs, since they find it more difficult to convince people of their capabilities.

February 3, 2011 at 6:51 am
(2) autism says:

Malia – that is probably the most reasonable comment I’ve ever read… from your lips to the ears of the community!!

Lisa

February 3, 2011 at 10:39 am
(3) Sandy says:

What makes it difficult is when over time, the autism community changes how they term things. Autism and asperger’s are actually part of the PDD category. They are two different diagnosis within the PDD’s. The criteria of each listed under the PDD’s are pretty specific, however there is no such real term as HF and LF and to each person and parent, either can mean many different things. I think it is fair to mention those with a Ph.D. started out severe and non verbal and really didn’t grow out of autism. Since all kids progress, it’s ever changing what you’d explain to any teacher year to year however a conversation about accommodations would actually be inappropriate to discuss only with a teacher. It’s an IEP discussion. At the same time, I’ve had teachers realize a need for an additional accommodation, so their input is very valuable. It’s a 2 way street, many times the parent listening is something no one talks about. The idea is the parent is the one doing all the talking.

I think the media and many writers have a set agenda, and often focus on a set of what they think autism is. Some writers only write about the most severe. I happen to read all I can minus a few area’s, regardless where my child currently sits on the ever changing realm of a ‘spectrum’ and how each determine what that is. Even though my child isn’t in any life skill classes or residential schools, it doesn’t mean I know for sure he never would be. No one knows who their child will grow up to be.

February 3, 2011 at 1:28 pm
(4) Bill says:

I am endowed with Asperger’s Syndrome.

Every day I search in Google News on every common variant spelling of autism and Asperger’s, looking for every new bit of research, and to stay aware of how autists are portrayed in the main stream media. I hope to better understand how to contrast autists versus neurotypicals, and both anecdotal stories and research results help illuminate the differences. It seems pretty clear that a large percentage of people on the spectrum inherit their unique neuroses and that both “autistics” and Aspies share common genetics, therefore results from well designed studies which exclude fetal trauma autism and concentrate on essential autism are meaningful to a major part of the spectrum.

I personally feel too much ink is spent on speech delays, and not enough on face blindness. In the grand scheme of things, face blindness is more debilitating than speech delay. I still can’t recognize my own children in old photos, nor identify my children by voice when they call me.

Imagine how challenging placing a face-blind Aspie would be in a grade school run by nuns wearing habits! How many mothers out there automatically presume their child recognizes them?

February 3, 2011 at 1:48 pm
(5) Lisa says:

Wow, Bill… that’s got to be terribly frustrating!

February 3, 2011 at 2:13 pm
(6) zusia says:

One reason I was happy my autistic son got kicked out of Kindergarten was because he was indeed faceblind and they wore uniforms. This was an issue for Joe whose teachers considered him non-compliant because he couldn’t identify his classmates.

On the other hand, my sister is faceblind and we attended private school with uniforms and she says she doesn’t remember it being a big issue. She identified students by characteristics– I remember her best friend in elementary always wore two long braids.

This is not the case for most people with faceblindness, especially those with dyslexia who seem to have a worse outcome than my relatively NT sister.

February 3, 2011 at 2:30 pm
(7) zusia says:

People who aren’t autistic tend to separate the different levels of functioning, and they also tend to think the different levels do not have much in common. This really isn’t true. While people with “higher functioning” may be able to speak, even quite intelligently, and achieve many goals, even find success, they still share many of the same traits as their severely autistic nonverbal kin. They just have a milder version, or fewer brain differences overall, or the ability to compensate better.

I’ve worked with autistic children for years and I totally relate to their little worlds, their sensitivities, their inability to communicate. My autism may manifest differently, because I have the ability to compensate, but I can look into their eyes and know we both perceive the world in similar ways. We are the same, even though we look different to the world.

February 3, 2011 at 2:31 pm
(8) Lisa says:

Zusia – would you say those commonalities are the usual ones listed in the diagnostic literature, or are they quite different?

February 3, 2011 at 2:56 pm
(9) zusia says:

Lisa– I think the commonalities straddle both diagnostic criteria and what we call “soft” traits. And also include co-morbids like anxiety, faceblindness, etc.

February 3, 2011 at 3:17 pm
(10) C. S. Wyatt says:

Since I was originally diagnosed mentally retarded, was non-vocal (not even crying), didn’t crawl or move about, engaged in self-injurious behaviors, and doctors didn’t think I’d do anything… am I or am I not part of any “autism” group?

This entire debate gets frustrating. A parent of a “classic” autistic child meeting me today cannot imagine that my parents endured the same emotional (and financial) stresses. They don’t realize I’m the result of 40+ years of interventions that continue to this day.

I’ve been called a “shining Aspie” and still don’t get it. I don’t have Asperger’s and was never diagnosed with AS. I view that label as something of an attempt to “downplay” my experiences or my value as a researcher with autism.

No, not every child can make the progress I have. I think that is an essential, honest admission. Some parents, in fact most with severely impaired children (and I don’t have a better way to express that, sorry) will not be able to see their sons or daughters off to college. They might not see their children move out and live either alone or with a companion. They worry, as mine still do, that there won’t be a safety net for their children as adults.

To me, that’s the line. Severe is when there is little to no realistic opportunity for self or companion-assisted independence. (I know I’m not independent, financially or otherwise, but I have a companion who helps me succeed apart from my parents. My wife jokes that I’m as independent as most men. Maybe that’s true.)

Severe is when the person forgets medical appointments, basic hygiene, and daily routines. It is when there must be someone externally helping with daily tasks.

Mild / high? I describe that is where I am. I might never be “normal” but I admit and know that I am fortunate to be able to write, even when I cannot speak. I know I am rarely unable to take action for myself, even if that action is asking for assistance.

February 3, 2011 at 3:30 pm
(11) Sandy says:

Prosopagnosia isn’t specific to autism or asperger’s and would be a co-morbid disorder aside from ASD. I’m not even sure it would be true prosopagnosia since many with autism don’t make eye contact, many wont see the details others typically would about a persons face. My son focused on the hair area. Either faceblindness or speech delay can be as debilitating as the other but that more would depend on age of the person.

February 3, 2011 at 4:38 pm
(12) zusia says:

Sandy– you’re right, faceblindness isn’t specific to autism but is, like I said, a co-morbid disorder. Studies indicate that a third of autistics are faceblind, so it is a commonality, and Lisa asked about commonalities. Faceblindness, by the way, has nothing to do with ability to make eye contact.

February 3, 2011 at 4:43 pm
(13) Malia says:

Lack of communication skills, however, can make a person appear to be face blind when they are not. Early on, several people who knew us assumed my son was faceblind, but in the end it had more to do with delayed language processing… When approached by people, he simply couldn’t process the interaction and formulate a response quickly enough, so people would say hi to him on the street and then would have moved on before he could respond… and then they assumed that he did not recognize them (i.e. was faceblind).

February 3, 2011 at 4:52 pm
(14) Sandy says:

Zusia~ I was making my comments not in reference to what your comments were, but Bill’s. I’m also aware of those studies however, my personal opinion as stated is eye contact is a valid part of it for my son who has autism for how he recognizes faces he should know. It makes sense to me for those with autism, since prosopagnosia can occur to anyone, including those with TBI.

February 3, 2011 at 5:16 pm
(15) Heather says:

Actually, I more commonly look for articles about HF Autism vs Aspegers. My son is Gifted and HFA (2e HFA) so his being fairly visual spatial and not hugely auditory and / or lang based, I’d look for those kind of distinctions in articles for him.

Yet, I’m studying to be a special ed teacher, so knowing ASD and disability, in general, is a useful knowledge area for me to seek out. I’m also a Contact Point for parents of newly diagnosed children to call and find local resources (and am the CP to our ASD Parent Support Grp).

In either case, I rarely communicate any info on my DS to the other parent as my DS is likely on the extreme high end of functioning and really there isn’t that much in common. So I certainly can see how both HF and LF parent support grps would be useful (if the town can support it). If not, I just try to keep my mouth shut.

February 3, 2011 at 6:57 pm
(16) Eileen Parker says:

I am considered high-functioning, but it wasn’t always so. I didn’t talk until I was approximately five years old. This was a problem for my mother, but not for me.

I have had a rotten time with so many things that autism stunts-not just the social. Heck, I was on disability for over 10 years because my functioning was so low.

What is severe? I don’t understand because my ASD is not considered severe anymore. But, pain is pain.

I don’t have the understanding of experience to help parents understand, but non-verbal kids don’t either.

I am so thrilled with apps that help non-verbal children communicate. The parents are thrilled, and they learn that they have a lot to communicate, which is joyous.

Autism runs in my family, so the possibility of having an autistic grandchild is quite possible. At least the child will have a Grandma who understands and loves the child just as is–like me, a loving Grandma.

February 3, 2011 at 8:17 pm
(17) barbaraj says:

I’ve seen such an overlap, including some I thought at six as pretty hopeless later being on par with those that seemed very mildly affected . Maybe it’s all in that word,”delay” and how they as individuals handle that delay.

February 4, 2011 at 12:23 am
(18) Twyla says:

zusia, very interesting! and Eileen too.

February 4, 2011 at 6:02 am
(19) Larissa says:

Excellent read. My kids are both on the spectrum but one has a much more…. Profound? Set of challenges. It is a daily challenge to juggle their needs. But so much of their struggles are just the human condition too – how to connect, how to learn, how to express and receive love and more.

February 4, 2011 at 1:52 pm
(20) hera says:

Hi Bill, actually I have a mild form of face blindness.Fortunately long term face memory does work;After several years of seeing say a neighbor, I will be able to recognise their face out of context, and some people are more distinctive than others.
it is such a relief when you look at someones face and you actually know who they are!
Yet perhaps as a compensatory mechanism, I am very good at reading body language,which does help a lot;even if I don’t know who they are, I can tell if they have been having a bad day!
Also of course, there are the safe conversational gambits, weather etc, that you can talk about without actually knowing who you are talking to.

February 4, 2011 at 2:33 pm
(21) Bill says:

I threw out the bit about face-blindness as a two-fer, also responding to Lisa’s previous requests for tips to autism parents because they may not realize their child may not ever recognize them as a unique individual. (And nothing can be done about it)
The face blindness has been on my mind recently because my brother happened to mention to me that he could not recognize our mother when she had her hair done, and most recently because an old family photo had been left sitting around, and I could not identify which of my sons it was.

I read a book a while back about a blind man whose sight was restored, but tragically was unable to learn to recognize faces, apparently because his brain had never developed a template for faces. I do not know if autistics do not create a face template because they do not look at faces, or if they do not look at faces because they lack a mechanism for creating templates. I have sort of a template; every female looks like my sister closest to me in age. I do better with adult male faces, which are more angular and three-dimensional. I can look over a labyrinth of office cubicles and 100% accurately identify men just by seeing their pate bobbing along. Unfortunately I quickly forget them if I do not see them every day, and I can never remember their names. I suspect I am unable to remember anyone’s name because I can’t create a link in my mind to a face. (Co-workers exist in my mind as job titles and locations where they sit.)
I am also unable to recognize voices by timbre; I only recognize voices by listening to several sentences and identifying unique accents and speech patterns. I will never be able to identify which of my sons is calling me, because they all have the same accent.

February 4, 2011 at 3:17 pm
(22) zusia says:

Bill– Faceblindness has been in the science news increasingly in the last few years, and while we don’t have all the answers, a lot has been identified. Facial recognition is not a matter of looking at faces, because the majority of autistics do not make eye contact or look at faces, yet they can recognize others, sometimes with savant-like skill. Those people are called super-recognizers.

There are different areas of the brain that are involved in facial recognition, and those parts may work differently in some people than in others. Facial recognition relies on the brain’s ability to see a whole rather than parts, and to store in memory and retrieve later. There are so many areas in which processing can go awry.

At the same time, there is feeling that faceblindness may harken back to a more primitive animalistic need to recognize faces using distinct clues rather than the face itself. A common example is the ability of a zebra to distinguish its family among a herd of zebras. Perhaps faceblindness runs alongside a skill set that we simply do not understand.

For instance, it’s very common for dyslexics to be faceblind and we know that some dyslexics have visual as well as auditory processing problems. Well, we call them “problems” but in reality, it’s just a processing difference.

People who have an ASD plus ADHD plus dyslexia seem to have the most severe cases of faceblindness, while people with no discernible neurological differences have the least problems with it. People who developed prosopagnosia due to brain injury manifest their faceblindness differently.

February 5, 2011 at 3:54 pm
(23) barbaraj says:

Yesterday I had an interesting experience, one that boosts my beliefs a bit on autism being step two after mitochondrial assault. A little guy was in a grocery cart being pushed by his grandmom, she was trying to convince him to sit and telling him the consequences of standing could mean a fall to the hard floor. Cute really. I said, how old is he, which interrupted the scenario and he quickly sat..after all I was a stranger..she said ,”three”. I do NOT know what I said that led to this, but in just the time it took for the deli guy to slice a pound of yellow american, I found she had six grandchildren, two of which have “rare” metabolic disorders. Neither of which is genetic or the “SAME” as the other. Our local hospitals could NOT diagnose the first case, sending her daughter to Philadelphia for rounds of testing for the child. It seems the first “victim” was close to death at age 18 months, and now at age 11 is fine, the other was the boy in the cart. The deli guy asked the little boy if he wanted a piece of cheese, the grandmom answered for him, then said to the boy in a very direct face to face slow manner, “cheese” and shook her head yes, and he shook his head yes. My son, not brilliant, just normal, two months younger, said, “what kind”, I don’t really like it, could I have the kind they put on pizza instead”. I was embarrassed, why I don’t know, but somehow I felt like a showoff, then explained to her that he’s just a little more “noisy” than most, and that he is my only unvaccinated child and thank God he’s never had ear infections or anything like his sibs then in my apology I added “not one of my other children were like this”, they spent their first two years in a cycle, vaccine..illness..repeat. She said, all of her grandchildren have been fully vaccinated and never had a problem. I said, that’s wonderful,you are so lucky.

February 7, 2011 at 1:18 pm
(24) vmgillen says:

Do answer your question, Lisa:

I tend to skim ANYTHING with an ASD/PDD/DD tag. While some things relate directly to my son (I term it “we-ain’t kidding autism” cause, yeah, I’ve developed an attitude about people defining pocket-protector wearing engineers using the same criteria used for my son – who doesnt talk, burned down our house, broke my arm, SIBs -no kidding around there!) other stuff relates to societal constructs and pre-conceptions about my son, via the ASD label. When ASD is defined via formerly-known-as HFA examples, it becomes easy to attribute severity to bad/lax parenting: Bruno B. redux!

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