Sometime ago I remember attending a lecture by John Robison at IMFAR regarding his life experiences as an autistic individual. John expressed that despite his success, autism had provide a few stumbling blocks in his career. For John, autism by itself (and not something due to comorbidities), had been a source of chronic discomfort.
Despite the distress or anxiety provided by his autism I consider John to be a lucky man. He has been able to broaden his own life’s perspective by being highly malleable. Thus far he has established successful careers as a guitar engineer for heavy metal bands, electronic toy designer, auto mechanic, photographer and writer. The story of John brings to mind Viktor Frankl who said that the way you imagine your future affects your present life. In terms of John, he never gave in to apathy but made the most of the opportunities that were presented to him. Once given his diagnosis, John didn’t partake on a blaming game but rather found the diagnosis liberating and went on to pursue further dreams.
I have had the opportunity to read Rod Morris and Jane Johnson’s books on autism. The books describe the paths taken by high functioning autistic individuals, who even though challenged by autism sought a diagnosis to explain their plight. Those with positive outcomes saw the diagnosis as an explanation to life’s previous challenges, but decided nevertheless to continue their own paths. In forging ahead these individuals found freedom, peace, grace and courage.
There are other autistic individuals, primarily lower functioning, who haven’t been as lucky. They can’t have a realistic expectation of success in life as they feel, and truly are, handicapped by sensory issues, abnormalities of fine and gross motor skills, mood disorders, seizures, language impairments, etc. Compounding these problems, many autistic individuals lack in cognitive flexibility; that is, they have an impairment in the mental ability to switch between different subjects and to think about multiple concepts simultaneously. Their perception is thus acquired from a tunnel vision that makes them excel at pessimistic rumination.
In the case of the less successful autistic individuals it is easy to note that problems related to their diagnosis provided a burnout. These problems were with them every hour of the day and every day of the week. Autism in this regard is very similar to occupational stress. Sometimes stress is not about what is happening in the environment but about your subjective appraisal of the same. I think that for some of these individuals the problems of having autism could be compared to those of an enlisted soldier facing combat or those of a traffic air controller. It makes a difference in how you feel if there are constant expectations placed on you that can’t be met. Autism can thus be challenging and anxiety provoking. In some cases this anxiety state may last your whole life and provide for a stress response that is always active.
«Burnout is not a simple result of long hours. The cynicism, depression, and lethargy of burnout can occur when you’re not in control of how you carry out your job, when you’re working toward goals that don’t resonate with you, and when you lack social support. If you don’t tailor your responsibilities to match your true calling, or at least take a break once in a while, you could face a mountain of mental and physical health problems.» See https://www.psychologytoday.com/basics/burnout
You can’t cure autism but you can help manage its symptoms. I often hear Temple Grandin state that she would not have been able to function without the help of anxiolitics. Temple and others may be the first to acknowledge that change is difficult and in order to accomplish the same you must be motivated and have realistic expectations. Temple was proactive and took responsibility for her future, she was an active agent of change. Maybe not every autistic patient can gain that empowerment. However, the road will be easier with social support. Temple’s life would have been very different if not for the presence of a sympathetic science teacher. Supportive adults act as environmental buffers. Emotional support does not have to come only from humans, dogs and other animals may do. Can you build on them as positives?
Remember that being smart is not the sole answer; you need emotional and social intelligence. Skills need to be improved in individualized manner. Does the individual has a high or low perceived control over his life? Is there any meaning to his/her life? Cognitive Behavioral Therapy can help to recalibrate our perspectives and promote resilience and well being in the face of adversity (bit.ly/23SBFgv).
CBT may be an alternative for higher functioning individuals. In controlled trials it has been of benefit for chronic pain. This same pain may underlie the discomfort found in social relationships and the consequent loneliness and alienation from others (which makes them targets of bullying and deindividualization). Introversion should not be a block towards establishing social interactions. Indeed, in many cases social skills are present but are blocked by anxiety. Does he/she has maladaptive thoughts (e.g., catastrophizing and all-or-non type of thinking) or do they tend to exaggerate beyond rational bounds?
Meaning is built into your own life, based on your values and family. Meaning allows you to broaden your life’s perspective, approach a bigger picture or a grand scheme. Are there priorities in your life, what brings joy to it? Explore having a connection to something larger than yourself (spirituality)? (bit.ly/1XdpI0h)
Does the individual experiences chronic pain, comorbidities? Headaches, GI disorders, ear infections are often seen in autism. These comorbidities affect your mood, behavior, and self-esteem. Ultimately they may cause physical suffering that adds to the emotional one. Get a good night’s sleep. People with chronic medical conditions have a higher prevalence of insomnia, and it gets worse with time. Sleep deprivation, by itself, may cause impairments in function and mood (bit.ly/20QVbHD).
Finally, remember Frankl:
“We can discover this meaning of life in three different ways: (1) by creating a work or doing a deed; (2) by experiencing something or encountering someone; and (3) by the attitude we take toward unavoidable suffering.” (Note: Frankl made it clear that suffering was not necessary to find meaning, but that meaning could be found in spite of suffering.)
Viktor Frankl. Man’s search for meaning. Beacon Press, 2006.
Jane Johnson and Anne Van Rensseler. Siblings: the autism spectrum through our eyes. Jessica Kingsley Publishers, 2010.
Rod Morris. The identification of autistic adults’ perception of their own diagnostic pathway. Trafford publishers, 2015.
Autism has made my life very difficult, though I’m at the higher functioning end of the spectrum. I do feel the constant stress you speak of.
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There is nothing like untreated,and undiagnosed.chronic medical conditions to negatively impact the quality of,and sense of meaning in one’s life.There has been study after study about the substandard quality of health care children and adults on the spectrum receive.There are similar reports,and patient stories,from the rare disease community.With the advent of whole exome sequencing,and other advances,we are seeing that autism and so called rare diseases can overlap or coexist in a significant subpopulation of those on the spectrum,especially in syndromic autism with multiple comorbidities.Autism is a highly heterogeneous thing,that can appear in an endless variety of disorders.Most we are still learning of.Rare deletion or duplication syndromes,inborn errors of metabolism,rare genetic mutations for neurological disorders,not previously known to exist with autism,etc.
If you,or your child,is in severe GI pain all the time,has frequent seizures,and has all sorts of other coexisting illness,in addition to the autism,and associated speech,learning,behavioral,or intellectual disability problems,an autism diagnosis alone isn’t going to cut it.Answers and treatments are needed.This is what has driven many parents to the antivaccine movement,but this is the lazy person’s way out.Gaining true answers,takes years of hard work,but in the end can bring both empowerment and peace of mind.
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Thanks for your comment. Maybe you could consider expanding on them and making them into a blog–I would be happy to publish the same. As an aside your first paragraph greatly resembles the type of work my wife is doing at present in regards to bioinformatics.
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I had to Google bioinformatics to see what it meant.I am not so much interested in computer models,as I am clinical studies,and biological mechanisms behind the disorders that lead to autism.The immunology,genetics,and metabolics is something I have become keenly interested in recent years.Paul Whiteley with his Questioning Answers blog,and the articles he posts on his Twitter feed,which he also posts on the sidebar of his blog,have been a great help in allowing me to keep up with the research.
I am sure you are aware it was trying to find answers to my own very complex history that got me interested in all this in the first place.The twists and turns of the medical evaluations I have gotten in the last few years have gotten me a dual diagnosis of both the inherited immune form of cerebral folate deficiency,and a previously unknown form of Ataxia-telangiectasia like disorder (MRE11 mutations).
You are the second person to suggest I write for their blog.Peter Lloyd-Thomas in the UK has made a similar offer as well.I have been hesitant to do so.until I had gotten the full picture of what was going on.Also on many days,I simply do not feel well enough to compose long posts.Today is a rare exception.Nor am I sure how much of my story I should tell,but I will consider it.
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Although my wife does bioinformatics must of the work done is by hand. She reviews genetic databases looking for risk genes in common when talking about autism and comorbidities. She is interested in knowing the spread of such genes across other neuropsychiatric disorders.
Please feel free to consider writing the blog.
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Autism is a quite interesting response, however, my knowledge of it is limited.
Life clearly begins with DNA combinations from both parents and is also influenced, to a lessor degree, by later environmental «events». Events (except in quantum mechanics) always have spatial and temporal, or more precisely, space-time coordinates. See figures in (JR Newton Medical Hypotheses 1999 52(1) 77-83)
This DNA occurs in factorial numbers, e.g. billions, of possible combinations and a particular combination of base pairs, usually in epistasis, can result in a later animal information system «anomaly», i.e. an unexpected dynamic response. These anomalies are currently classified by various diagnostic standards into relatively few categories, such as autism, depression, bipolar etc.
DNA combinations and environmental events determine a system’s event timing and thus event «synchronization» i.e. event coordination. This coordination determines an individuals behavior yet it is unpredictable. Joe Ray Newton firstname.lastname@example.org
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I am not quite sure about that.
One gets the impression that there can be no happyness for LFs and those that are high functionning are poor marthyrs.
That is not my experience as my low functionning son is happy tearing newsprint, listening to music , walking, doing morning exercises,by throwing things through a internal window again and again, including a couple of old toasters, etc etc. He does not have a purpose in life except being, although he does not speak so we cannot be sure.
As for HF, I have also known phenotypes who are quite happy, impetuous, ungrateful..steam rollers in their tunnel, and if there are marthyrs this is rather their employees, wifes and associates.
Perhaps being unhappy is a sign that autism is not all:, Other genes operate like those of kindness, generosity, truth etc and some people, inteligent people, have sensitivities about them which, with autism or without, can mean suffering. And there are things out there which give us reason for fighting or playing.
I do aggree that the supposed co-morbidity does not explain anything. Most co-morbid conditions are products of autism itself. and iatrogenic effects. Old hyerarchical diagnosis has been abandonned for comercial purposes and given way to tick-a-box psychiatry.
We do not give medication we fought againts it and againts people who wanted to medicate their failures or their lazyness. . Professionals tried to make us feel guilty: we should do this or the other,, we should do more…, But when we feel a pang of guilt we look around to those parents that did try programs, medication, institutions etc. Their sons are not better of their autism and they look less happy, they had dystonias,, obesity, NMS….one died,
He does not have epilepsy or bulimia and is hiposexual thank God, but he had, hearing and touching hypersensitivity, uncontrolled fever when, he had a cold, self slapping tearing of clothes his and others, these things have mostly gone
Yes of course it is very painful that he does not look at our eyes, that he does not speak (I have beautiful dreams that he does!!), that we cannot hug him. But our other thrre children have in some senses given us more problems, although with them it is up and down, storms and traps,.not a steady worry.
I like the idea, scandalous as it might seem to progressive people, that it is our punishment for the sins of youth. It gives me meaning. We do not enjoy it is our cross but we have learnt to bear it, and to look around for times of rest and enjoyment: books cards walks etc. And it has made us deeper and wiser. And we enjoy when he smiles and dances.
The problem is not other that our age. ¿Who would look after him after we go? Till them if we could get him to sleep till eight o’clock and shave and cut his hair and nails without so much resistane, that would be an achievement.
Happy New year guys.
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My own grandson is happy in between seizures. The problem is the downtimes when he is complaining like something is hurting and all of the times we have had to take him to the emergency room or to be hospitalized. I wrote another blog in regards to how his life gave us meaning https://corticalchauvinism.com/2014/11/17/why-do-bad-things-happen-to-good-people/
Gracias por tu participacion. Abrazos
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Spend your time with your grandson, he deserves compassion. He may seem happy on the outside but you never know if someone inside is a lot more aware of just what is going on than we think. He still feels pain.
I’ll quote what the Catholic church said about the Nazi killings of the disabled:
«Conscious of the obligations of Our high office We deem it necessary to reiterate this grave statement today, when to Our profound grief We see at times the deformed, the insane, and those suffering from hereditary disease deprived of their lives, as though they were a useless burden to Society; and this procedure is hailed by some as a manifestation of human progress, and as something that is entirely in accordance with the common good. Yet who that is possessed of sound judgment does not recognize that this not only violates the natural and the divine law written in the heart of every man, but that it outrages the noblest instincts of humanity?
The blood of these unfortunate victims who are all the dearer to our Redeemer because they are deserving of greater pity, “cries to God from the earth».»
The people who spoke up during these atrocities were the Churches, the families, and more. And now with eugenics being a popular fad on the internet among trolls (I even heard one use fetal alcohol syndrome and eugenics in the same sentence without seeing any irony), we live in a time where it could happen again. The irony is how both neurodiversity and these trolls do believe one thing in common, it is all genetics and breeding can solve it, ignoring enviromental causes. The hypocrites, not realizing we are causing many people to be born ill with what we are doing to our enviroment and bodies. It makes me seeth at this social injustice.
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Okay Mariano, looks like the real victims are the people around me. The struggles I’ve faced in my life are nothing, nonexistant. I am a stupid thing, not a person with needs and wants who deserves life, I don’t need help. I should go and commit suicide since I am a thing, not a person.
After all, my struggles growing up, my major depression, the pain is all nothing, a joke isn’t it? Why bother doing my best and trying to forge ahead or whatever, I am just a nuisance. Trying to overcome my setbacks? Nah! I am only setting other people back, I’ve never had a single setback. I love being autistic and making other people frustrated on purepose. I have no emotions or depth either! MWAHAHAHAHAHAHAHAHA Hey, how about you come and kill me with your own hands and get some satisfaction from that if I am so worthless?
I should quit my job, stop studying on the side, stop trying to live my life to the best of my abilities, just end it all since you are 100% right about how we, one the higher end, are never miserable, we are stupidly happy as we wreak havoc on others like violent serial killers! Nothing but malignant living hells!
I am sure my parents and loved ones would jump for joy if I died, I’m sure they would be glad to be rid of me, as they are the real martyrs after all!
I wonder if what your patients would think if they found out what a gigantic and smug bigot you are.
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It is true that I’ve experienced real suffering as a result of being autistic. For many years I believed I was less than the others around me by virtue of my differences, long before I knew about autism. Even after I knew, the feelings of inferiority lingered.
It’s only now that I am starting to let go of those bad feelings and I’ve begun to see that it’s my autistic differences that have made me special. As much as I wanted to be like the other kids, I now realize I’ve been successful because of my differences, not in spite of them.
I also see that it’s just luck that I made choices of work and interest areas where I could be successful Who could have imagined when I was 15 years old that the music-engineer path – an autistic fixation – would lead to KISS? No one would have guess that; most adults said it wasn’t college and was a track to failure.
It’s also luck that I have enough ability to follow through and get stuff done. My own son is (according to the tests) smarter than me, but he has more executive function challenges, and I see what I razor edge we may be on trading off gift vs. disability.
And you are right – success begets success; failure begets failure. By now that has become a cumulative thing for me, and no one knows how to start young people on a «success track.»
And the biggest thing is that I am affected by what some would call «just the right amount of autism.» and am blessed with good working intelligence. Without that I would be lost. People with greater autistic impairments are much more challenged getting work. It’s very hard to get mainstream work with substantial communication challenges. I’m also lucky to be free of most medical complications. My son has more trouble with that. It’s certainly in my family – I had several non-speaking cousins when we were growing up, and the tragedy is that they are all dead now.
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Thanks for the comments John. We may have plenty to talk about next time that we meet.
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