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Can a Person with a High IQ Be "Very Autistic?"

By September 14, 2007

When talking about the autism spectrum, it's common to use the terms "low functioning" and "high functioning." The implication is that "high functioning" autism is less of an issue for day-to-day functioning - and thus that "high functioning" autistics require less support, less treatment, and fewer services. But About.com reader Carole Rutherford, in a comment on this blog, had this to say:
There is nothing at all holistic about an approach that talks about making too much of the persons problems and keeping them in perspective. A high level of intelligence does not diminish the level of autism/Asperger syndrome. In fact sometimes it heightens it. If I and many other parents know this to be true why do so many professionals ignore it and try to make our children and adults fit into neurotypical boxes?
From my own experience, I can say that I agree wholeheartedly with Carole in this sense: Many people with "high functioning autism" or Asperger syndrome have overwhelming sensory problems; accompanying mental illness (depression or biopolar disorder, for example); and/or extreme anxiety. These issues are very significant and very real - and can make daily life almost impossible with a good deal of support and intervention.

But are these issues - anxiety, depression, sensory issues - the same thing as autism? Or are they separate issues that occur for different reasons - perhaps as a result of having to navigate an often-incomprehensible world? At this point, none are part of the core diagnostic criteria. Even the experts are still on the fence regarding the question of whether anxiety, depression and other mental disorders are actually part and parcel of Asperger syndrome.

What's your understanding of this issue? Can a person be very high functioning and also "very autistic?" Or are some people with high functioning autism also suffering from separate - often severe - problems? And if a person with Asperger syndrome is, say, also anxious - should the anxiety be treated as part of the Asperger syndrome? Or should it be treated as a separate medical issue?

Comments
September 14, 2007 at 4:22 pm
(1) Harold L Doherty says:

What terminology do you and Ms Rutherford consider permissible for those of us with low functioning children to use in describing the severity of our children’s autism disorder?

September 14, 2007 at 7:09 pm
(2) Robert Slaven says:

“Functioning” does not equal IQ.

I have a high IQ. I have Asperger’s syndrome. I function tolerably well in society. But I have severe depression, addiction problems, and very poor social skills. I’m getting treatment for those … but it’s not very holistic, and doesn’t tie in well with Asperger’s at all. (There are almost no health/support services in Canada for adults with ASD who are not institutionalised.)

I know autistic people with equally high IQ’s who, however, do not have the other skills necessary to live independently.

It’s a lot more complicated than just IQ scores or “high-functioning”/”low-functioning”.

September 14, 2007 at 7:23 pm
(3) Carole Rutherford says:

PLEASE call me Carole :)

I abhor the word functioning when it is used about a person. I would personally love to see the words high and low functioning gone forever. I say this because no matter what end of the spectrum if there has been an official diagnosis of autism, children and adults with that diagnosis all have the same triad of impairments.

It was never my intention to offend anyone here. I run a support group and have hands on experience right across the spectrum. I have seen first hand how difficult it is for parents who have none verbal children who are severely disabled by their autism. I would never make light of this. However when the parents of these children ask me Ďwhat is it like for you?í I am often amazed when they make statements like Ďthat must be so hard for your sons to live withí Coming from a parent who is often scrubbing faeces from a bedroom wall at 2am that is quite humbling.

I am not entirely sure that it is possible to say for certain how well a person is functioning especially if they have severe problems communicating. My own sonsí functioning is affected by their environment, stress levels and whatever is going on in their lives and ours on a daily basis. Some days they simply shut down and go into a somewhat catatonic state. That to me says that they are being seriously affected by their disability no matter what their IQ is.

My point was that just because a person has an IQ over 70 does not mean that that person can live their lives without any input of support. However the type of the support they would require will of course be totally different to the parent who is cleaning her bedroom walls at 2am. At 2am I am often reassuring my eldest son who is once again thinking about death that I understand, often I do not. I suppose that I am indeed fortunate that he can tell me what his fears are but that does not mean that his life is easy because he can do that.

I hope that this has made some sense to you and reassured you that what I posted was never intended to offend.

My personal thought is that where my own two sons are concerned anxiety is part and parcel of their autism. However their autistic behaviour does increase with their levels of anxiety. I say this because one part of the triad is communication and when my sons are stressed the first thing to be affected is their ability to communicate. When my eldest was being diagnosed with Keratoconus which has severely affected his sight, the Specialist wrongly believed that because my son was being highly verbal that he was aware of what was being said and was going on around him. When I tried to inform him otherwise he became very cross with me and said that my son could speak for himself. My son also said that he needed me at that moment to be his voice and his ears. Sadly the guy was still unable to comprehend. My sons also shut down socially when stressed and simply leaving the house can be too much for them. How then will they ever be able to hold down a job?

September 15, 2007 at 2:57 pm
(4) Amanda says:

Harold: It’s really pretty simple.

Talk about what specific areas your child does and does not need help with, or is and is not good at. (Don’t say “will never” though because I don’t care who you are, you can’t know that.)

Carole: My brother, who meets the official Asperger criteria and has a consistently high IQ and lives what our society calls independently, was the one who played with the contents of toilets as a kid. Many totally non-disabled children do that too. It has nothing to do with IQ (I said “consistently high” because mine has been high, high-normal, and low-normal, in that order, and I think the test is messed up somehow or else they’d have been far closer together).

I didn’t do that, and I have more trouble with so-called independent living than he does.

I think the best thing to do is take things on a skill by skill basis, and make sure what time period you’re talking about. You can describe it in terms of how well the person does the thing, in what manner the person does the thing, and at what point in time this is true. (Since for many of us we can get better or worse at something or have our skills fluctuate throughout the day and/or our lifetimes.) While not talking about the future, because we can’t know the future.

My IQ has always tested above seventy (sometimes far above, sometimes not far above), but my last tested adaptive functioning quotient (which are supposed to be roughly equivalent to IQ in most people) was something around 47 (I always get it wrong, but something around there, on a test that only goes down to 40), and that’s a pretty standard finding in autistic people, that IQ and adaptive functioning aren’t correlated.

September 16, 2007 at 10:52 am
(5) Marla Comm says:

I have so-called high functioning autism (HFA), which was diagnosed when I was 3, and an above average IQ. Although my co-morbid Tourette’s, personality disorder, motor skill deficits, attention deficit symptoms, anxiety and severe sensory integration disorder(SID) reduce my ability to function even more than autism alone, my autism symptoms are also severe. I can’t cope with even the slightest change. Socially, I have no interest at all in fitting in or having friends. The literature states that compared to low functioning autistics, high functioning ones have a greater desire to make friends despite lack of social skills and are less rigid than low functioning ones. Thatís not the case for me.

All my conditions work together to make some tasks like household chores next to impossible. I happen to be weak in all the skills needed to clean, organize belongings, prepare food and do other chores. Years of mounting frustration with these chores reinforced my SID reactions, making them get worse and spread to sounds two things involved with the chores make when they touch each other. The irritation those sounds and other sensory stimuli cause is so unbearable it sets off rages that lead to destructive and self injurious behavior. The more I try to do these chores, the more they irritate my nerves and the clumsier my hands become. The very stress of them leaves me barely able to do even things Iím better at.

I also have a fragile nervous system that canít tolerate much stimulation and limits me to routine low paying part time work. I need a lot of downtimes between activities. Trying to do more than my nerves can take makes me crabby and even harder to get along with. The fast pace of life in todayís world makes it impossible to slow down. Iíd be best off in a small, laid back city with a dry climate, but canít afford to relocate to one.

I read that HFAís can get additional psychiatric disorders like depression because of the stress of coping with the effects of their disorder. I am also finding out that HFA adults who spend their lives in unsuitable settings, work hard to function in the ďnormalĒ world and donít get the support they need are prone to burnout when they get older. Thatís precisely what happened to me. Years spent struggling with the same load of responsibilities as a typical person, working at an increasingly difficult job in a government run long term care centre (as medical records and library assistant), getting bullied at school and everywhere else, putting up with changes and disruptions I canít adapt to, dealing with the hardships of life in Montreal, fighting in vain to get services and trying to manage with no support wore my nerves out. I am now so depleted I have no ambition and use up all my mental energy to just get through a day.

Now that Iím in my fifties, I am feeling the effects of aging. Aging with autism is relatively unexplored territory because adults who got diagnosed in childhood are just starting to face the challenges of midlife and old age. I feel that the transitions associated with midlife are contributing to my burnout. I read that the physical and mental health issues that normally accompany aging can cause the compensation strategies that help a younger HFA manage in society to break down.

What Mr. Slaven said about lack of services for autistic adults in Canada is certainly true of Quebec, where I live. Quebecers are that the mercy of the CLSC Ďs (government run health & social services agencies), which do nothing at all for semi-autonomous adults like me. Iím registered as a client and have a social worker, but she and the other CLSC workers do absolutely nothing but placate me with lip service. Except for my elderly father who is often busy or often out of town and doesnít understand me, I donít even have family support. My parents went into denial when I was diagnosed at age 3, expected me to become a ďnormalĒ adult and thus gave no thought at all to building me a support network. When my father dies I will have no one at all.

We do have the institutions Mr. Slaven mentioned, but they and other assisted living arrangements like group homes are the worst things for me. I donít tolerate group living. I also have a personality that would make the regimentation unbearable. My quality of life also depends on routines that would be impossible to continue in any facility. Our institutions arenít the kinds of places anyone would want to live in. As an employee in one of Quebecís long term care centres, I see for myself the chaos the government created. Staff in all our hospitals, residential care facilities and CLSCís are overworked, demoralized, burnt out and too bogged down with paperwork to look after the people in their care.

Some HFAís take medication to treat psychiatric symptoms like anxiety and depression, but none of the drugs agree with me. All I get are side effects that are so uncomfortable they make me feel worse. Others take up OT to work on dexterity and other skills needed for daily tasks, but the best time to start is in childhood. Some adults benefit as well, but I am too worn out to work on anything. I reached the point where even trying anything that requires my weakest skills like dexterity does nothing but set off rages. At this stage the only humane way to improve my moods and behavior is to provide me with the support I need and relocate me to a more suitable city. Sadly, I donít have the money for that.

Mental health and social service professionals and society at large donít realize the hardships some intelligent HFAís face. They assume that they can lead completely independent lives with no support because of their intelligence. By publicizing only the success stories and attaching ASD labels to fully able adults who march to different drummers, the media does people like me a disservice. We live in a society that expects all adults who have at least normal IQís and are deemed able (by its definition) to be fully self-sufficient, productive and not seek help unless they can pay for it. It considers people like me who canít function as well as a typical adult lazy defeatists and has no interest in their plights. As long as it continues to abide by that belief and ignore stories like mine, ASD adults will never get the services they need.

Marla

September 18, 2007 at 1:14 pm
(6) Chris says:

I think every person is differnet in that sence. I think people need to address issues as they come up. If it a problem that interfers with daily life such as obsessive thoughts or actions…it needs to be addressed. I do not think drugs are the answer every time. I think drugs should be an absolute last resort. The labels are confusing people too. The high functioning, low functioning. It makes people think they know the person with autism without knowing the person, because of the label. People are so very different although a huge majority still need the same therapies such as speech therapy and those things are varied because not eveyone needs it all.
I think we need some different thinkers in the tank of autism. Labels are confusing. I say just treat the symtoms. Like constipation was one of my sons issues…many kids suffer from gastrointestinal problems. You treat that with diet and possibly stool softners etc. Each issue needs attention and in order of what appears to be a priority.

September 18, 2007 at 3:37 pm
(7) Dewertsmom says:

I have an asperger son, he is very bright and sometimes the teachers forget he has asperger’s because he doesn’t misbehave, does his homework assignments and right now has straight As. Today it backfired on one of his teachers, she collected a classroom assignment before he was finished. My son had an anxiety attack in the classroom. I had a long talk with the ESE specialist at his school, she was very concerned. She told me that we have three years to get him over this. (sophmore in H.S.) Young adults with Asperger’s are given very little support. I was even surprised to learn that my son does not qualify for any medical services in the state of Florida because he was dx as asperger’s instead of autism. The state of florida does not recognize asperger’s. A person with autism just because thay have a high IQ doesn’t mean they don’t need any social supports. I command the govern of New Jersey

September 18, 2007 at 5:02 pm
(8) Carole Rutherford says:

Dewertsmom said ‘I had a long talk with the ESE specialist at his school, she was very concerned. She told me that we have three years to get him over this.’

This is appalling would they expect a blind person to be able to walk around school unaided after three years.

When will these people recognise and accept that Aspergers Syndrome is for life not something that children grow out of after kindergarten!!!!!

Here in the UK we have just about managed to convince the professionals who diagnose AS and autism to diagnose and Autistic Spectrum Disorder (ASD). This is because AS has always been the poor relation of the spectrum and mostly left out.

I have two sons with ASD. The elder has AS while the youngest has a diagnosis of autism. At the moment the eldest requires the greatest support.

September 18, 2007 at 6:25 pm
(9) Joanna says:

The flip side of the coin is that those diagnosed as having severe autism or low functioning autism many times are automatically seen as mentally retarded. Without having appropriate tests and/or a workable mode of communication for these kids, how can we know what their mental capacity and potential can be. Let’s assume they have intellect and go from there. As an instructional aide, I know that the more I expect from an individual, the more challenges they overcome. Although sometimes labels are given for treatment/services, they many times limit others’ expectations and create the situation that they defined. I’ve been lucky to work with kids when they were in lower grades and see them progressing to adulthood. It’s amazing to see them grow and mature…learning more each day. Joanna Keating-Velasco http://www.AisForAutism.net

September 19, 2007 at 8:56 am
(10) Sandy says:

I believe IQ and functioning level are two separate things. A person can have a very high testable IQ but not be able to use it practically in every day life. A person with a low IQ may be able to function more practically. High and Low Functioning terms is a broad term in itself, each leaving out so much a child cant or can do and does not at all give a full picture of a person or child. People tend to think the worst of LF and the best of HF. I myself would also like to see the terms gone for good. People often think a child who is verbal is HF, but never stop to listen how that child uses their words or if their functional at all. just because a child considered LF has a low IQ, does not mean that child cant learn. All it means is that child’s way of learning isn’t adaptable with a standard IQ test. My child tests very low on IQ, but I know if they could present it to him in his manner of learning, he’d ‘get it’.

Where I live, Asperger’s diagnoses would not gain County help. Many states have guidelines and cut-off’s. This also trickles into schools as well, less services are given to those with that diagnoses. The key to any diagnoses is this: how debilitating is that diagnoses to every day- every minute living for that person or child. If it is not clearly seen, you have to specifically show this.

September 22, 2007 at 11:21 am
(11) Kristi says:

I appreciate Amanda’s comment about the validity of the IQ tests. My 8 year old son (Dx:HFA)tested at 89 twice before and after Kindergarten. At the time both people testing him expressed that because of his autism, he likely scored lower on the test than his actual IQ because it is such a verbal test (his auditory processing is in the 5th percentile). Then this summer he tested at 56! Considering I really do believe his IQ is higher than 89, this is atrocious that this testing would even be acceptable for people with autism. I’ve heard that there are more visual ways to test IQ. Anyone have experience with that?

September 29, 2007 at 5:38 pm
(12) Kim says:

One problem with testing anyone on the ASD spectrum is that they don’t have the same social motivation as other people do. People without ASD are motivated to score as high as theu can for social reasons. Someone on theh autistic spectrum might lose interest in the test and start answering randomly while thinking about something else. In addition, some IQ test questions are knowledge based (as opposed to skill-based). People on the autistic spectrum tend to learn relatively little about things that don’t interest them while learning a lot about their specific interests. There isn’t the same social motivation to be well-rounded.

April 23, 2008 at 5:39 pm
(13) laura says:

I hadn’t read about aspergers but this psychiatrist i saw mentioned it and then said ‘oh it would be easy to be diagnosed with aspergers wouldn’t it?’ How is it easy not to get people and what they are saying total lies and hypocrasy all the time, how can anyone help me comprehend change and stop ocd rituals going crazy and god i’m a mess at 20 i started to talk about the things i hid all the time because my teachers and mother and everyone just hoped it would go away. I’m ashamed to be me. I put myself in stupid situations due to drink and i only drunk to feel like socialising or attracted to people. I just wish someone had helped me when i was younger instead of ignoring it and making me so asheamed, if you grow up with poor mental health in fenland then your stuffed. I’m intelligent because i read, i read because noone would help me, i couldn’t read because i got fatigued from glandular fever couldn’t excersise and my squinting habits became unbarable, i dropped out of uni and now because i have words for people, words i have so much trouble in the accuracy and my comprehension, noone can help me, noone can see i’m a scared little child who doesn’t want to push anymore for people to like her. How can i teach myself to like change to go back to school, to stop habits i’ve had my whole life. What can i read that i haven’t read, are there doctors that will listen that wiull see me through the verbal rubbish, i am defensive because the world doesn’t want to help, they want the burden lifted the easy way out and sadly everyone these days has compassion purely for the payroll. Death would be the easy way out, it took courage to go for a diagnosis, for an identity i suppose.

September 7, 2008 at 5:35 pm
(14) Phillip Pavot says:

T

September 7, 2008 at 5:38 pm
(15) Phillip Pavot says:

The pschologist from my school test, tested me, for 2 days since I going to graduate from this school, to see how well I learn in school. After, that I received a result from my job coach , The scores were lowers, and borderline.

September 7, 2008 at 10:30 pm
(16) William Keeley says:

I believe that one can be severely autistic and “high functioning.” I know because I am both. As a child, I displayed every symptom of classic autism. I did not speak until I was four years old. I also head banged, bit, made no eye contact, flapped, stimmed, etc. I manage to navigate society today because I’ve been trained to be in essence a professional actor. In fact, I only recently came out about being autistic even though I have known for most of my life that I was in fact autistic (yes, I have been professionally diagnosed. I came out in the hopes of helping other autistic people. Some may accuse be of faking autism to get benefits, but there are ESSENTIALLY NO benefits whatsoever offered to autistic adults who can work. In fact an autism diagnoses can be used to DENY BENEFITS and even jobs.

The only benefit that I get (or can get) for being autistic is being a client of Florida State University’s Center for Autism Related Disabilities.
This benefit entitles me to check out books from the C.A.R.D. library. The people who work for C.A.R.D. are kind and very willing to be helpful, but they have a very limited scope of services they can provide directly to autistic adults.

My advice to people whose autism is not widely known is to keep it secret unless wanting to help fellow autistics. A diagnosis of autism will only handicap a person in society, it won’t bring about any type of monetary benefits.

September 16, 2008 at 7:42 pm
(17) Vinnie says:

The truth of the matter is human beings are barbaric, if people were not so callous and prejudiced many people with AS would not have any problems. It’s really a reflection on how horrible human beings are in general, and why our world is riddled with war, poverty and strife.

August 1, 2010 at 12:56 am
(18) chrischem says:

Wow! I agree with you wholeheartedly! I was ridiculed as a child and I still have a difficult time making friends and integrating myself in social situations. My older daughter is also having these problems and my heart bleeds for her. People can be so cruel – especially children! Sometimes I feel like moving to northern Canada, becoming self sufficient and becoming a hermit. My daughter and I would be very happy living this way. Your comment made me feel so much better and I hope others will some day understand the aspies plight.

December 7, 2010 at 9:03 pm
(19) Paul in Minneapolis says:

I’m 47 and after reading about High-Functioning Autistic people, I know this is what I am.
I have done things that people can only dream about, and it was nothing at all to me. Still, I have many autistic issues. I can say the worst part of autisum is not being able to have a normal relasionship…

Now I understand so much. When I was 6 they thought best to not label me with something bad, but now I have figured it out. If they did label me, then I would have known myself. Although a lot of people would say different.

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