Feelings; you’re doing it wrong.

I’m tired of being told (and reading about) what to feel and not feel, in regards to my son’s autism. How I feel about his autism is a reflection of scores of factors that others do not have access to: My feelings are not some random spurting, that needs to be corrected and adjusted by more enlightened parents.

I want to throttle enlighten other people sometimes when they are busy rejoicing in their child’s disabilities, but I understand that emotions are informed by our experiences, expectations, political and religious views, etc. There is much more sense in debating those underlying beliefs and knowledge that lead to the emotions, rather than skipping the hard stuff and going straight to attacking people for their feelings.

There are some emotions that are particularly important to feel, in order to reach a place from which you can adjust to your new reality, without having those suppressed emotions coming out in inappropriate or hurtful ways in the future. A prime example is grief, and the various stages of grief. Yet it is common that parents of autistic children are told not to feel this; “don’t grieve, your grief implies loss of a child, but you still have the child you always had, so stop feeling that, righto?” Let the poor parent feel what they’re going through, without criticising them into silence and withdrawal. Give them time to work their way through the change.

You don’t know whether this is their first autistic child, or their third. Maybe it’s the only child they will ever have, or they took ten years to conceive it. Maybe they don’t have any resources in their local area for special needs children, or they themselves have special needs and don’t know how they’re going to cope with an afflicted child.  Even if you do know such things about the person, you probably don’t know their level of experience with and understanding of autism, or their values in life. It’s very likely they are going through the process of learning about autism, and are coming to terms with the unknown. Give them a chance to do that.

To a large extent, emotions are not right or wrong, they just “are”. It’s like attacking someone for daring to sneeze, without knowing if they were sick or had hay fever or pepper tickled their nose or they faked the sneeze. In the same way, the emotion is the “symptom”, but you can’t definitively tell someone what it is a symptom of and then attack them for it. Humans are not quite so simple or obvious.

I understand the desire to share wisdom that comes from years of dealing with these children; the impression that you might have of yourself as a beacon of light to the confused and lost new parents. But there is no one path we all tread on this life-long journey. The severity of the autism and whether it ever improves, differs immensely for each person on the spectrum. It can help other parents if you share your journey, and the reasons for your own emotions, but it may do very real harm to tell them what their own journey and emotions must be.

I’m going to tell you to feel whatever you feel. Try to understand it, yes. Try to change it, if you’re ready to do so. But try to deny and ignore it, or feel guilt about it? No.

[I wrote a previous post about “unhelpful platitudes” which might help anyone trying to figure out what you should (and shouldn’t) say to parents dealing with a newly-diagnosed child.]

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5 Responses to Feelings; you’re doing it wrong.

  1. Jenny says:

    Great post! When my son was diagnosed, I was so glad to have an answer and know I wasn’t crazy, that I didn’t grieve. I was already in “get to the helping” mode. I grieved this past fall, when he went back to school and we went through all the transitions that go with that and it took him a couple of weeks to get back to his normal. Good job encouraging others!

    • Thank you Jenny 🙂

      Those are great examples of how parents can react differently to seemingly the same experiences, and why those differences occur. I think it’s wonderful that you found joy in getting the answers you needed. We unfortunately went through grieving, which was made worse by some family members determination to tell us nothing was wrong with our child, even though we suspected autism prior to the diagnosis. “It will pass, your child is fine, he’ll grow out of it” were not helpful things to be told as your trying to come to terms with what your child has and figuring out what you need to do for him. Some even denied that autism was a genuine diagnosis, so we were at times being judged as bad parents who were in denial of their bad parenting! Having a good support system helps a lot. Dealing with other people’s denial and ignorance, doesn’t!

  2. Sarah says:

    You’re right. Nobody has any business telling anybody else how to feel. I think it’s very important to make a distinction between what we feel [which is completely involuntary] and how we respond to, process, or act on our feelings [which is within our control].

    I don’t know any parents who claim to have never experienced any grief over their child’s diagnosis. It’s universal, as far as I can tell. What’s not universal is how we choose to process it, talk about it, and act on it.

    I think there are forums which are completely appropriate for talking about our grief in any way we choose: support groups for parents, our personal blogs, and conversations with close friends and family.

    But I also think there are situations in which we censor ourselves out of respect for the feelings of other people. When my son is old enough to understand, I will be very careful about how I talk about my grief with him, because I don’t want him to get the impression that I am disappointed in him, or that he is a burden or that I blame him for the hard times we’ve been through as a result of his autism.

    For the same reasons, I am careful about how I talk about grief around autistic adults. I don’t pretend that the grief doesn’t exist, but I do choose my words carefully with other people’s feelings in mind. We do this kind of self-censoring every day— each time we stop ourselves from blurting out, “Oh my God, that shirt looks terrible on you,” and substitute it for something more tactful. I think we have a responsibility to think about the way our words may affect other people, and I do a lot of thinking before I talk about grief and autism in a public forum or around my kids.

    As you said, emotions are never wrong — they just are. They provide us with a fascinating opportunity to understand the value systems, beliefs, and experiences that produce them — in ourselves and in others. And we’d all have much more productive and interesting conversations if we focused on where the emotions come from instead of trying to tell someone they’re doing it wrong.

    • Very well said Sarah. I agree.

      As an aside on what you’ve said, I’ve thought a lot lately about how I am going to deal with explaining my son’s autism to him when he gets older, and I haven’t found the answers yet. I suppose I have a few years to get my head around that one. You have some interesting thoughts on that; it’s a tricky one.

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