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.