InterventionFatigue
Intervention Fatigue can take the form of this never-ending cycle ...
Individuals eeks help for poor mental health →Professional does not recognize the features of unstereotypical Autism → Autistic person is undiagnosed or misdiagnosed → Autistic person receives no validation or effective help → Feelings of frustration and brokenness lead to greater emotional distress → Individual seeks help for poor mental health → Professional does not recognize the features of unstereotypical Autism → Autistic person is undiagnosed or misdiagnosed → Autistic person receives no validation or effective help → Feelings of frustration and brokenness lead to greater emotional distress → Individual seeks help for poor mental health → Professional does not recognize the features of unstereotypical Autism → Autistic person is undiagnosed or misdiagnosed → Autistic person receives no validation or effective help → Feelings of frustration and brokenness lead to greater emotional distress → Individual seeks help for poor mental health → Professional does not recognize the features of unstereotypical Autism → Autistic person is undiagnosed or misdiagnosed → Autistic person receives no validation or effective help → Feelings of frustration and brokenness lead to greater emotional distress → Individual seeks help for poor mental health → Professional does not recognize the features of unstereotypical Autism → Autistic person is undiagnosed or misdiagnosed → Autistic person receives no validation or effective help → Feelings of frustration and brokenness lead to greater emotional distress → and so on and so forth until complete exhaustion and a final and complete mental, physical, financial, and social breakdown.
I have laboured the point by way of repetition for the reason that repetition is required in a world that is deaf to value, to fact, and most of all deaf to pleas for help and the explanations, the histories, and the life-long cycle of miseries behind those pleas. I call it the prophetic voice. If I have a tendency to repetition in my writing it is precisely on account of having been caught in a cycle of unresponsiveness, deflection, and indifference.
Intervention fatigue describes a situation in which an Autistic person has made persistent attempts to seek help, but has been repeatedly ignored, refused, or given the wrong advice and sent in the wrong direction, with the result that the problems which led him or her to seek help in the first place come to be exacerbated, leading to a deterioration of mental health. The cycle is debilitating and can result in feelings of helplessness, powerlessness, brokenness, and exhaustion.
I, like many other autistic people, have had this. In part, the cycle is initiated and sustained by the fact that autistic people themselves may not quite be able to describe their needs and problems accurately. I would repeatedly complain to my doctor of 'psycho-social anxiety,' thinking that would be enough for her to make a diagnosis. At one point, in despair, she pleaded 'you have to give me some help here, give me more information.' I didn't quite know what she was asking for. I get the impression that with respect to autism we are all looking through a glass darkly. Here and there there are shafts of light. But problems associated with autism are so very easily misdiagnosed, as when burnout is treated as depression.
The cycle begins with autism as a condition around which there is so much ignorance and misunderstanding. In 2019, when my doctor told me to go and research the condition and return in two weeks, I had next to no idea about autism, other than negative stereotypes of backwardness, learning difficulties, emotionless and unresponsive facial expressions.
The individual knows when he or she is having problems, and seeks help to identify their source and possible solution. The professionals fail to recognize the nature of the problem and the autistic person comes to be undiagnosed or misdiagnosed. There is a pronounced institutional tendency to blame individuals seeking help for their own problems, advising or instructing them to make all the effort to overcome their difficulties. The general emphasis is upon self-help. The extension of that approach to the particular case of autism is thoroughly destructive, effectively telling the autistic person that there will be no help, only added hindrance. The aatistic person receives neither help nor even recognition and validation with respect to the problems they raise. Learning that not only is no effective help forthcoming, only added challenges compelling them, on the basis of a misdiagnosis, to learn to help themselves, autistic people cease seeking help. This results not only in feelings of frustration but hopelessness, causing great emotional distress, trapping the individual in a cycle of negative perceptions that experience consistently confirms rather than breaks. Expecting the worst and finding the worst, you stop seeking help.
I keep returning to the proverb: “the most beautiful woman in the world can give only what she has.” When you approach various institutions and organisations for help, they will, should they recognize that the problem is such that 'something should be done,' offer what they have, whether or not it is appropriate. Often, the help is not merely besides the problem, it adds to the burdens of those seeking redress. The autistic person learns that it is safer not to seek help, avoiding not merely disappointment and frustration, but also additional onerous challenges and tasks to no productive end, which is often the best – or the only thing - that institutions can offer.
Many autistic people simply give up the search for the help they need. They come to believe that the help they seek doesn't exist 'out there' in the world and that their needs are doomed to be unmet. Autistic people know that they need a more holistic approach to meeting their needs. The problem is that the institutional world is specialised and compartmentalised, with professionals and providers dealing only with their own specific areas of care and expertise. That charges autistic people with performing the tasks of coordination and inter-communication which require the very skills with respect to executive function which they find the most challenging of all. I am left having to quote the words my struggling doctor spoke to me: 'you have to give me some help here.'
It's so very hard to avoid being drawn into this destructive cycle, and hard to break that cycle, even when you know that social, financial, mental, and physical exhaustion and breakdown lies at the end of it.
I know the problem well, so well as to rarely ask institutions for the help I need, and knowing I will be ignored, denied, or diverted if I did. I have learned to expect disappointment and deflection. In part it's a deficiency in resources and capacity – institutions can only give what they have, according to judgements of where the greater need lies – and in part it's a deficiency in knowledge and understanding – professionals in their different compartments not only may not properly identify the nature of a problem being raised but may be institutionally inclined to define a problem in one way rather than another. I know that the source of my physical ailments are social and mental grace of autism. I have received the best help with respect to physical exercise in the gym – because that's the most easily understood and the most accessible.
This is the cycle that autistic people easily find themselves trapped inside, and the most depressing thing about it is that they know that it leads to exhaustion and breakdown and yet cannot escape it other than by a complete withdrawal in whuch they resign themselves to never having their needs met and problems solved. This is a legitimate form of institutional gaslighting which always but always makes it look as though it is the autistic person who is the source of the problem and hence its sole solution.
Someone comments:
“That is the main tactic of health care givers. Medical integrity is rare. It sucks. The vulnerable can’t push back. We shouldn’t have to.”
Someone agrees:
“This happens also when the system is not accessible to our communication needs. We end up exhausted trying to explain our needs in a way that fits the application form rather than the other way around.”
“I'm exhausted” says another.
The cycle is never broken in its own terms and ends only with the complete mental, physical, and social breakdown of the autistic person.
If you can, back your talent, pursue your special interest, try to 'marketize' it, and take your life out of the institutions and into your own hands. That's the only cycle-breaking solution I have found.
