It is certainly no secret that signs of depression are seen in many people with autism. In fact, the Journal of Autism and Developmental Disorders ( Vol. 32, No. 4, August 2002) published an article showing that clinic-based studies suggest that depression is probably the most common psychiatric disorder seen in people with autism. [1]
As a person with autism, I have personally struggled with depression, as have many of my autistic friends. So why is it that so many of us with autism struggle with depression? Though I cannot give you a biomedical reason for this, I do have my theory.
To scratch the surface of this problem, we must first understand what depression really is.
Though many of us know a little from pop psychology magazines or exposure through the stories of others, as a culture we really know very little about depression. Mitchell Moffit (@mitchellmoffit) and Gregory Brown (@whalewatchmeplz) at AsapSCIENCE have a great, short video that can help give you a better picture of The Science of Depression. [2]
(Watch the video here –> https://www.youtube.com/watch?v=GOK1tKFFIQI&list=UUC552Sd-3nyi_tk2BudLUzA)
It is obvious that there is a complicated undercurrent to the structure of depression. Even though depression is caused by many factors outside our control, the video also said that the depression became visible in the person by their response to negative life events. This is a delicate area I am entering, so I want to be clear that I am not saying depression is caused by people’s inability to handle negative life events. Rather, I want to point out that it is possible that autistic people, in our struggle to interpret our emotions, may be less equipped to handle negative life events.
For example, the events leading up to my most depressed state were typical, negative life events experienced by many teenagers, not just autistic ones. But my delayed development of emotional interpretation, inability to interpret body language, and social issues compounded each issue. These experiences built up to a very large pile of negativity, making the sorting process a larger task than I was capable of performing. Now layer on my genetic propensity for depression, lack of diagnosis, and lack of peer support, and you have a Gordian knot of negative neurosis.
Looking back, there is nothing I could have done differently because I was flying blind. Not diagnosed with ASD until age 27, it was impossible for me to know where to start. Yet, despite the fact I was undiagnosed, and not receiving any kind of therapy, I still managed to pull through my deep stage of depression. Though I am never “cured” of depression, I have adapted strategies for managing my day to day life with overall feelings of joy (though I still have the occasional dumpy periods).
If you have heard me speak about autism, you know that I found my diagnosis to be a blessing; as if I was handed a tool box for solving the mysteries inside me. You also may know that I credit much of my progress with autism to my time in therapy. So the next question becomes, how did lack of a diagnosis help you recover from depression?
It didn’t. Let me explain.
Therapy was a wonderful tool. With each meeting, I was able to talk in my own way, and work through issues with my therapist as if she was a co-worker helping me on a project. I was a huge part of my own recovery, and I really wanted to understand the interaction between my logic and my emotions. I wanted to feel happy and I wanted to be strong with autism. I was not looking for a cure. This was helpful and would have been helpful at a younger age. I am certain that therapy following a diagnosis at say age 15 could have really helped me to pull through my depression without the extensive inner damage that working it out on my own caused. It could have also shortened the time I suffered with it, and kept me from dropping out of school. But the lack of a diagnosis meant I wasn’t in day to day autism related therapies like ABA, floortime, social skills therapies, or the like.
Part of the problem for autistic kids is the modern day autism machine.
Autistic kids today are put through a rigorous system of interventions. Many kids from sun up to sun down are put on a very rigid schedule, being told what to do at every minute, being constantly corrected by either negative/positive reinforcement, or simply by having someone physically make them do the task. They are forced to talk, forced on a variety of diets, molded, corrected, and pushed hard every day of the week, with no breaks.
Parents, only wanting what is best for their child, follow the advice of professionals in an attempt to give their child a “normal” life. This is especially difficult for parents of children who have such problematic behaviors such as hitting their heads against walls because the parent just wants the child to stop hurting themselves. Professionals aim to cure autism, and then parents partake in the exhaustion of minute by minute therapy because they truly think it will help. I don’t blame parents for wanting a happy child.
But who is doing the research to determine the long term effects of putting a kid in overly rigorous regimen of therapy?
No one. We measure the apparent positive progress of therapy, but not the negative outcomes of completely reprogramming every impulse of a particular human being.
Imagine, being born into a world where every natural impulse you have, every thought that originates inside of you, is being met with anger, tears, opposition, correction, and redirection. It is very frustrating, and leads us to the idea that who we are as people, is wrong. Interventions begin to feel like punishments, and we are blinded by our own self-loathing. Instead of helping us find happiness and develop independence, the therapies end up being the autism equivalent to reparative therapy used on homosexuality.
Yes. That bad.
Let’s take a deep breath, and talk about happiness for a moment.
After all, we can’t truly understand depression in autism, and my assertion that too much therapy can push us into deep depressive states, if we don’t first understand what makes us happy.
Dr. Seligman, whom some call the Father of Positive Psychology, asserts that 60% of our happiness is genetics, but that the other 40% is in our approach to finding happiness. He talks about three kinds of happiness, the pleasant life, the meaningful life, and the life of engagement. He breaks down the common practices of truly happy people to help us understand the components we might add to our lives in order to have happiness. [3]
Though I do not agree with Dr. Seligman on all of his points, he does make an excellent argument for the types of happiness, much like C.S.Lewis did with his argument for the 4 types of love. However, what is even more poignant about Dr. Seligman’s speech is in revealing the shift in psychological medicine over the last 60 years. He educates us about the Disease Model of psychology and how, despite many positive outcomes for this approach, this model brought about negative consequences. Not only did the Disease model turn many therapists into Victimologists, it turned psychology from the research of normality, genius and high talent, and that in psychology’s rush to repair damage, interventions for making people happier were forgotten.
It never occurred to them to help make people happier.
The very structure of autism therapy today, in many cases, is based on the disease model. We blame everything we see problematic in an autistic person on the autism itself, even when autism might not have anything to do with the issue at hand. Genius and high talents are widely ignored, and are often overlooked as “islands of genius” with no real world application, or seen merely as a “special interest” that gets in the way of healing. Autism therapy then, by its very nature, overlooks the concept of making the autistic person happier.
If happiness is not part of the therapy model, then emphasis is constantly focused on correcting our weaknesses. If autism, as a whole, is seen as a weakness, then it becomes impossible to separate the autistic person from the problematic aspects of autism. Since therapy cannot cure autism as a whole without destroying the individuality of the autistic person, we then start to perceive ourselves as useless, broken, and worthless.
It is only a matter of time before this all becomes so heavy, that depression inevitably sets in. Depression brings about more problematic behavior, and therapy often increases to correct even more problems. This is probably why depressed people with autism start to resist therapy, and may even start to deny they have autism.
You weren’t in therapy for autism, so why did you get depressed?
Depressive states are not uncommon in people with autism because we work so hard to make sense of a world that seems unkind to differences. When autistic people have added to them the constant burden of correction, and healing, these depressive states are magnified and deepened. Since we are bitter and injured by over-corrective therapies, we start to resist interventions that could really help us with depression. Our response to the autism machine painting autism with a broad, negative brush, is to view all of therapy as invasive, abusive, and painful.
Simply put, we start resisting the therapy we actually need, because we were overly corrected by therapy that was not helping us to seek happiness.
What can we do?
Let those of us with autism:
…enjoy our simple pleasures, even if you don’t understand them.
…lose track of time, and immerse ourselves in our own world.
…have regular days off from therapy.
…receive awards for progress, no matter how tiny of a step it was.
…have opportunities to talk in depth or totally immerse ourselves in subjects we enjoy. If you can’t stand the topic, find us someone who does.
…exercise in our own way. Not everything has to be structured.
…engage in our interests without parents trying to find the therapeutic value in it. We want to have fun too.
Help those of us with autism by:
…helping us discover our purpose.
…teaching us to be optimistic.
…showing us how to be a good friend by example, not by forced interactions. Socializing should be a family event, side by side, not a therapy.
…aid us in making or buying gifts for others so we can feel the enjoyment of giving to others.
…show us the benefit of resilience by showing us how you got past your weaknesses.
…being vulnerable and showing us you make mistakes too.
…surround us with happy people.
Therapy can be a wonderful tool, but it should never be used as a human jello mold.
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