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.]