Does my dad have Asperger’s?

I think he does but he won't talk about it

Topics: Since You Asked, asperger's syndrome, Mental Illness, Mental health, DSM-5,

Does my dad have Asperger's? (Credit: Zach Trenholm/Salon)

Dear Cary,

My father is brilliant, creative, successful and “quirky,” or what some people describe as just plain “different.” He is the president of a human services organization that he founded in the late 1960s. His expansive nonprofit organization has provided countless resources and programs to individuals and families affected by mental health and mental retardation issues, and it offers one of our state’s most robust autism resource networks. He has truly made a significant positive impact on the world. I am in awe of what he has been able to accomplish during his lifetime.

About five years ago I was reading about Asperger’s syndrome, which is considered to be an autism spectrum disorder (it’s worth noting that earlier this year Asperger’s disorder lost its status in the new mental health manual called the DSM-5; however, for description’s sake, I am going to refer to it as such in my letter to you), and realized that my father was pretty much a dead ringer for the diagnosis … very socially awkward, doesn’t pick up on social cues that listeners have lost interest in his very deep and specific topics of interest, perseverations on topics and hobbies of great interest to him like photography of gear and machine parts, and a general inability to connect at an emotional level with those that he loves, including his wife of nearly 45 years, which has caused major pain and difficulty in their marriage over the years.

I mentioned to my mom before our son was born that I thought Dad likely had Asperger’s, and that since it tended to be highly genetic, I thought that my brother and I would have to look out for it in our children. I never mentioned my observation to my dad because I thought it was not necessary and could possibly inflict pain. We accepted him for the human being he was. My brother and I, by the way, definitely do not have Asperger’s.



Low and behold, when our now 4-year-old son was about 18 months old, he started showing sign of Asperger’s. It started with obsessions with spinning objects, and robust vocabulary at a very early age, motor skill and planning issues, and problems with peer interactions. We were fortunate to have a very early high-functioning autism diagnosis from multiple resources (including my dad’s organization), and since then our son has been in 40 hours per week of various types of therapy, and he is thankfully responding in really positive ways. Although Asperger’s traditionally isn’t diagnosed in children until later in childhood, all of our son’s therapists, as well as my husband and myself, see it as a classic case of Asperger’s. He’s really, really intelligent, highly verbal, has passionate interests in things like skyscrapers, the human circulation system, machines and engines, and lots of other topics that most 4-year-olds won’t be thinking about for a long time … He will undoubtedly be the best at whatever he chooses to be in life. In the meantime, we are working to improve his social skills, and are giving him tools to self-regulate in hopes that in the short term he will not encounter too many painful experiences during his formative years. Our hopes in the long term are that his talents will be able to fully shine, and that he can be as successful as possible in relationships throughout his life.

So, when our son was diagnosed, I decided I had to tell my dad in the most loving way possible that I have thought for some time that he, too, has Asperger’s. I asked him if he had ever considered this and he said that he had. I treaded lightly and lovingly because this was not an easy topic to bring up. During that first conversation and the three following ones that I initiated, he never said much. He would just get teary-eyed and mutter a few things that were pretty meaningless. I told him each time that if I had a magic wand I would not change him or my son, and I meant it. They are perfect, unique beings and taking away their Asperger’s would take away part of what makes them so magnificent. We just want our son to benefit from resources that will help him to be the best and happiest version of himself, and we don’t want him to suffer from painful experiences in his formative years, which my dad definitely did. He still speaks with great pain of being placed in the “puddle jumper” group rather than the “jet” group in school. I provided my dad with the best book I could find on Asperger’s and asked him to read it and give me his thoughts. It sat on his bedroom dresser for months. He never got back to me about it, so I eventually took the book back, which went unnoticed.

I want my dad to be my son’s most powerful and important role model. I want my son to understand that his grandpa’s success in life has, in large part, been because of, not in spite of, his Asperger’s. I want there to be an open and healthy dialogue within our family, not something that is swept under the rug because of discomfort and unease. I don’t want there to be hypocrisy in what my dad has devoted his life to and how he lives his life with his family. I want him to be proud of his Asperger’s and what he has had to overcome and how he has used it to his advantage in life.

None of this is happening, though. Soon my son will be old enough to look around the family and wonder from whom he inherited his Asperger’s. It will be obvious to him as it is to myself, my husband and my mom. I worry about the damage that may cause. Sometimes I think that my dad’s youth was filled with so much pain because 60 years ago the challenges that my son is now facing then went unaddressed. Maybe it’s just simply too difficult for my dad to deal with. He has finally become a great success in life, and he doesn’t want to look back. Sometimes I wonder if my dad went into the mental health field those many years ago because he knew, at his core, that he was different, but he also knew that he had the unique abilities to help those who were also different. I sometimes wonder if his life’s work was a beautiful perseveration.

What am I to do about this complicated situation? I love everyone involved and I just want a healthy family dynamic and dialogue. It bothers me every day and I don’t know what further steps I can take to advance the situation.

Thanks, Cary.

Worried

Dear Worried,

I am in sympathy with your ideals and your desires but your father’s emotional life is his own. It’s his business. It may not be as available to you as you might like, but that is something for you to examine separately: how it makes you feel when your father shuts you out.

You say, “I want my dad to be my son’s most powerful and important role model.” That is a beautiful wish. But you don’t know what further steps to take to achieve it. That’s because there aren’t any. It’s not within your power. Here is a guess: You may be unconsciously trying to use your son as a wedge to break down your father’s resistance to intimacy. That is, you may be unconsciously using your son and his condition to meet emotional needs that are yours and yours alone.  That is ill-advised. You must let their relationship be as it is. That means that your son’s emotional life, too, is his own, even as you work diligently to prepare him for life as a person with an autism spectrum disorder.

Many things are not within your power. It’s not within your power to make your family the way you want it. It’s not within your power to manage the relationship between your son and your father.

But let’s talk about things that are within your power. It is within your power to express your love for them without preconditions. In many ways, that is what you have been doing and continue to do.

Will that change anything? Probably not. That’s not what it’s for. Love isn’t a screwdriver used to get inside people and fix things.

However, you might be able to change some of the concrete conditions. For instance, you could put your father and your son out on a farm where they could pitch hay together, or work on a tractor together. Relationships can be facilitated. They can be given what they need to grow. But they cannot be controlled.

Just express your love for them in terms that do not require them to change. What they need is just to be loved as they are. You are doing that already. Keep doing it. And don’t beat yourself up about it. You’re doing plenty. You’re doing fine.

If your worries become excessive, disproportionate or intrusive, consult a therapist, or look into ways on your own to combat anxiety and excessive worry through meditation, exercise and diet.

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