Guilt, grieving and other emotions when your child has Autism

There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.

“Should be”….  such a funny concept in a world of differences.

In my experience

emotionsI can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.

I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.

I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.

It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.

As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.

For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).

No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).

“Should Be” does not mean right or wrong

What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.

There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.

It’s not right or wrong, it’s just different.

Fear of the unknown

For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.

Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.

Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.

If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them.  They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?

Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.

We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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8 Responses to Guilt, grieving and other emotions when your child has Autism

  1. Jenny September 13, 2011 at 9:53 am #

    This kinda helps me feel better. We’re going through the process of having our son tested for suspected autism and it’s been… quite the experience. Three years of being told I screwed up my kid and how I should be fixing it… *sigh* Now we know it wasn’t our fault.

    Great post, really. I enjoyed reading it.

  2. Alicia September 13, 2011 at 10:10 am #

    This kind of thing I can understand, I don’t wish to judge other people feelings, but some parents talk about grieving like their child has died, or autism kidnaped a child.
    Your concern, that you called grieving, I agree and understand, I feel that as well sometimes about myself, but most mourn, and they don’t mean what you wrote.
    Mourning an alive person is not good, telling someone or talking in front of that person they grieve who they are is wrong for me, the feeling that your existence causes suffering can kill you, autistic people need to know that it’s good that we are born and that it’s good that we are who we are, we don’t get that very often.

  3. Angel G September 13, 2011 at 10:32 am #

    I never grieved my ‘lost child’ because, in my opinion, they are not lost – they’re right here with me.

    I have worried and felt guilt over things here and there. Normal every parent stuff. But even that is useless and gets us nowhere.

    “Worry is like a rocking chair. It gets you going but you get nowhere”
    (I love quotes!)

    Great post, Stuart!

  4. Julie Coryell September 13, 2011 at 5:02 pm #

    I agree that feeling guilty serves no purpose & doesn’t help anyone. I remember feeling guilty in the very beginning that maybe I waited too long to have her evaluated & wasted precious time. However, I remember quickly changing to “survival mode” acting quickly to get her into every possible service available.

    This past year I was overcome with crazy emotions and have struggled with a grieving period of sort, but not for a “lost child” as she is here with me, but more for “what could have been for her”. I worked my way through this, although not as quickly as my guilt phase. I was really shocked that just recently did I have this “grieving period” as it’s been 9 years since her diagnosis. I was thankful for a select group of 3 people that I could really share my fears and sadness with that did not judge me at all & helped me move past that time and start to dream new dreams for my daughter.

    Thanks for discussing real & important topics for our community. I think it’s great to raise awareness that although our struggles are similar, they are not exactly the same!

    Thanks Stuart!

  5. Brian September 13, 2011 at 8:16 pm #

    Great post Stuart. Jenny touched on my main feeling: vindication. When professionals tell us we’ve done a good job with no support, despite what in-laws think I’m not a screw up, great.

  6. Ben September 14, 2011 at 12:27 pm #

    Great blog. Thanks for taking the time to share.

  7. Ladylou September 14, 2011 at 2:47 pm #

    Our 22 month old grand daughter whom I am raising is being evaluated for autism.
    I always though she was different from our other grandchildren. They are all older in their teens so I couldn’t remember when they talked and when they reached a milestone. This little girl hasn’t talked only makes sounds. It didn’t worry me much till now. She walks on tip toe and till I read it was a sign of autism did I really begin research.
    I will do all that I can to help this child be the best she can be whatever that is. At this point the unknown is pretty scary though.

  8. Jim W September 21, 2011 at 1:00 pm #

    We ‘pre-grieved’. I think we had envisioned so many possibilities that seemed scarier and more ominous than autism, that when we finally found out it WAS autism, it seemed like a bit of a relief.

    Not to say it was “good news” per se, or that it didn’t come with its own set of scary future scenarios. . . but the actual diagnosis, at least for me, was a sort of ironic relief.

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