Adults with "mild" autism can have problems equal to those with severe autism (study)

Longman has hit the nail on the metaphorical head. I experience the problems Longman mentions daily, and this is why it is surely a misnomer to label as 'mild' those with high-functioning AS; possibly yet another misnomer, for how high-functioning are we really, and how do you measure it?

Yes, I appear very articulate, and I can fool people into thinking that I am far more emotionally and socially able than I really am; but then the cracks start to appear. After being in a social environment for long enough, particularly an unstructured and noisy one, I shut-down and have to make my exit. My stress and anxiety levels start to rise, and the social facade begins to crumble. Still, I try my hardest to keep appearances, but the anxiety and stress eventually burst out of me, and then I break-down with the stress.

In fact, I find it very hard to deal with people, and can only really cater for my own needs. This is why I struggle with the give and take of friendships, and so I end up not bothering with them.

Problems with sensory multi-tasking (too much noise and too many things going on) are also a problem, and I am lucky in not having any other sensory problems to contend with. But constant and unrelenting noise, hot stuffy rooms with people crowding in on me, all massively reduce my ability to function. And I am supposed to be 'mild'!.

I have a problem with sensory integration but I don't know what a learning disability is as I thought autism itself was one.

I think this confusion between autistic people who have a learning disablility and those who don't is very central to the problem of understanding autism, and getting the services in place that are suitable for autistic people.

I have severe problems from my autism, but am highly intelligent (multiple degrees etc.), and this is a big problem because professionals treat you as if you have a learning disablility, and then when you are articulate and knowledgeable they ignore the autism.

The systems just don't seem to be able to understand autism on its own. Autism should only be the primary descriptor of people where it is their primary "disability", if their learning disability is more prominent then this should be the main desciptor.

nmr1991 said:

I got HFA but contrary to what your notes say, I didn't get good grades, i was well-behaved, got a certificate for conduct of my year group, which was all well and good but I didn't achieve the grades that I wanted and so rightly deserved. I went to a mainstream school all the way from playschool to the end of sixth form and college, until now at university. I only ever achieved good grades in college, but because it was a vocational subject, things were practical and I didn't need much group sessions to better my interpersonal skills in.

I am being reassured that businesses in the next 5 years (which is when I expect to be employed) would require a certain level of social interaction, i've chosen my subject area of computer science because I would require little customer interaction but will need to keep in contact with a group as that is what i'd expect happens in an office environment.

Wasn't sure who you are addressing in the part I have bolded.  If it is myself, is it in relation to this part of the quote I posted? "very high functioning verbally and intellectually"

Being high functioning intellectually doesn't mean you have to be Einstein, it just means that you don't have a learning disability/intellectual impairment (which usually equates to an IQ below 70).

One of the issues is surely how obvious is your AS?

Those who show less outward signs, whether on account of less severe manifestations, or better coping strategies and ability to conceal, seem to be at a higher risk of depression, psychiatric problems and suicide.

The reason is they "blend-in" with NTs so far, but not enough to be totally accepted by NTs or to avoid being left at a disadvantage. Lack of social acceptance, or not being able to take on management or deputise, can reduce promotion prospects. Particularly not fitting into crucial social networks can be damaging to self esteem. Having to compete in an NT world with less obvious AS is destructive.

Where more manifest, in a sense you are likely to be accepted for what you are, in terms of disability, and while that risks direct discrimination, there may be less conflict of interest.

I got HFA but contrary to what your notes say, I didn't get good grades, i was well-behaved, got a certificate for conduct of my year group, which was all well and good but I didn't achieve the grades that I wanted and so rightly deserved. I went to a mainstream school all the way from playschool to the end of sixth form and college, until now at university. I only ever achieved good grades in college, but because it was a vocational subject, things were practical and I didn't need much group sessions to better my interpersonal skills in.

I am being reassured that businesses in the next 5 years (which is when I expect to be employed) would require a certain level of social interaction, i've chosen my subject area of computer science because I would require little customer interaction but will need to keep in contact with a group as that is what i'd expect happens in an office environment.

Aspergers can never be mild!

Some might say I have it 'mild', but that would just e based on the fact I can smile, look them in the eye, talk normally and maintain conversation. I rarely commit any major faux pas in public, and am very articulate.

However, I am self-centred, extremely anxious, have no true friends, can struggle with certain changes to routine, and so on.

I wish I did not have Aspergers, but I do, so I try and make the best out of a bad situation and maintain some persepective - this is very hard, though!

stranger said:

Studies like this also explain why the terms "mild", "moderate" and "severe" aren't good ways to describe Autism. They (as I mentioned in a previous thread) ignore the difficulties people with "Mild" Autism have and ignore the talents those with "Severe" Autism have.

Yes, here is the thread and I made my views known on that too:

http://community.autism.org.uk/discussions/health-wellbeing/diagnosis-assessment/whats-mild-autism

This professional has some enlightening views on it too:

Bill Nason, MS, LLP, Limited License Psychologist, Behavior Specialist.  Here you can find more information about him:
https://www.facebook.com/autismdiscussionpage/info

https://www.facebook.com/autismdiscussionpage

"Labeling - High and low functioning
We start this process when we seek a diagnosis to begin with. For parents with young children (1-3 years of age) who are seeking a diagnosis, I often recommend that they don't wait for the diagnosis. Forget about the label and begin supporting whatever developmental delays the child is showing. However, the diagnosis of "autism" doesn't say much about the degree of disability. There is too much variability in strengths and skills. When a diagnosis is not descriptive enough, people look for more specific ways to categorize the severity of disability. Not that high and low functioning are that descriptive.

In the medical field, diagnoses are categorized by symptoms and how much they impact the person's daily "functioning." It is the impact the disability has on the person's "functioning" that drives a lot of the services. For the most part, "high functioning" usually refers to good expressive speech, fair to good receptive understanding, and fair ability to function independently in their daily settings. "Lower functioning" is usually reserved to very limited verbal skills, often nonverbal, lower intellectual abilities, extreme difficulty understanding daily instructions, and needs a lot of assistance in doing their daily routine.

The confusion among parents and professionals is between "level of functioning" (intellectual ability), and "severity of autism." I know of children who are labeled "high functioning" who have severe autistic traits (very rigid/inflexible thinking, very resistant to change and uncertainty, and meltdown over simple snags in their day.) However, they are considered "high functioning" because they are very verbal, get good grades in school, and can do personal care independently. I have also met children who are considered "low functioning" because they are nonverbal, have difficulty with performing personal care, and difficulty with academics, but who's autism traits are less severe; more flexible in their thinking, handle daily transitions easier, can reference others better, and have fewer meltdowns. So, level of functioning doesn't also correlate with the severity of the autism. Just because a child is labeled “high functioning”, doesn’t mean he doesn’t have severe autism. Many people confuse the two, which can often exclude some from treatment, or lower the expectations for others.

We also have to be very careful when we equate “lack of verbal skills” with low intellectual abilities. The single largest characteristic used in labeling the child “high vs. low functioning” is the degree of spoken language they have. This also can be very deceiving! Although there is a strong correlation, there are many children who are nonverbal that have much higher cognitive abilities than we first recognize. They simply cannot express it in our customary ways. Once we find them a “voice”, whether through pictures, written words, manual signs, etc, we find they have much stronger cognitive skills, than we had anticipated. It isn’t until we find the right medium of expression do we begin to understand what they truly know. So, our best bet is to always assume “competence” to learn, if the right supports and teaching style can be identified. Don’t get too hung up on “low vs. high functioning” labels.

Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).

This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.

Making matters even more complicated, is the variable of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.

The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses."

It helped me to clarify in my own mind, why high-functioning is a ridiculous descriptor.  It would be better to just say autism with intellectual impairment/learning difficulty and autism for those without such an impairment.

Studies like this also explain why the terms "mild", "moderate" and "severe" aren't good ways to describe Autism. They (as I mentioned in a previous thread) ignore the difficulties people with "Mild" Autism have and ignore the talents those with "Severe" Autism have.

stranger said:

I think many of us already know this.

Yes, of course we do.  But it needs to keep being publicised.  Change cannot happen without some awareness and pushing.

It reflects a wider sickness across industry in this country. Thirty years ago we had ten year plus research plans and were thinking ahead to the next generation of whatever technology we were in.

The trouble with ten year plans is that they were funded from whatever products we produced, as part of the cost. As one of our main customers was the British Government they objected to the investment inclusion in costs, on the grounds in part that it made us less competitive (except our competitors did it and didn't suffer)

So the plan terms were steadily reduced. We moved from what used to be called "cost plus" to "fixed price", where a price was agreed and you stuck to it. Though why projects still went vastly over cost and got time delayed was the bureaucrats taking their cut - they never went fixed price (that's the other problem with Britain now - too many greedy fat cats) 

Over that time scale Britain lost the edge to stay out front, and we can never catch up. We now buy foreign products, mostly American, and just assemble, and do pituously banale bits of value added. We've become a service nation not a technology leader.

So what we now do is "service" which means exactly what you describe, no real research at all (we are so far behind now there's no point), and we are now talk show, public relations, latterday spivs.

At the same time the backroom boy has become almost extinct. In the days of long term research strategies there was always room for an eccentric working away on his own in a little room. That has been steadily eroded, until now everyone works in open plan offices with strip lighting and rubbish noisy air conditioning and heavyt emphasis on being social.

Also fixed price put an end to specialism. People had to be multi-skilled team workers taking on different roles on the "spur of the moment" and jobs for highly specialised individuals vanished.

Interesting given the Government has just launched Disability Confident that the Civil Service is now deciding to ignore disability in the way you describe. Public schoolboys hey....

I'm a  PhD in Computer Science, with mild Asperger's recently diagnosed in mid life; no sensitivity problems, just what would have be known in the good'ol days a bit of an eccentric geek. My communications skills are far from brilliant, but I compensate as far as I can by avoiding such situations. 

I moved into a major, world class Civil Service laboratory to do research but unbenknowst    to me the lab was changing to a more 'customer focussed role', or put simply it was doing less research, and moving to a position where it was more expected to manage research requirements which had been placed with industrial or academic partnering organisations.

This change is vastly beneficial to the more socially adept NT world, and though our chief executive has suppporting diversity as his number two concern for the lab's business the outlook for anyone on the spectrum is not good. I am incredibly unlikely to advance career wise, since though I have very good technical skills I do not match well as against the Civil Service Competency Framework www.civilservice.gov.uk/.../preparing-for-the-new-civil-service-competency-framework, which are biased against anyone one the spectrum esp. if you take language liteally, for example one of the comptencies is Delivering At Pace, and another one difficult even for those who language skils are good Seeing The Big Picture.

My favorite comment from my team leader is "It's now more important that we read body language than do research"

I think many of us already know this.