Guilt and Autism – 10 Things You Should Know

guiltFor someone who has not been a parent of an autistic child it is difficult to understand why someone would feel guilty for something for which they are clearly not to blame.

I think most parents feel a little guilt at some point, but  moms notoriously feel guilty for the “air they breath”.

Where does the guilt come from?

The guilt weighs upon parents until we realize that we simply never get the satisfaction of knowing that we have done “enough” for our child. There are so many treatments, therapies and “miracle cures” that there is no way that we can get to it all. They all site amazing “success stories” for all sorts of children (that are not your child), but results  may vary. You must be doing something wrong, after all OUR child is still autistic.

As parents, most of us were blind-sided by the diagnosis right at the height of our child’s toddler-dome. Just when we are basking in the glory of rearing this beautiful specimen of a human being whom we are convinced is destined set the bar for all human beings everywhere, its as if someone taps us on the shoulder and tells us that our plans have been drastically changed.

Then comes the onslaught of information. As we are reeling from the devastating news that our life is changing, they tell us that “Early intervention is critical” and hit us with the book of treatments. There is no time for licking our wounds, we need to get on the autism train. We don’t know where its going, its moving fast and has no time to slow down. ABA, IBI, celation, GFCF diet, OT, PT, Speech, IEPs, meds, social training, electrolisys, hyperbaric chambers, the list continues. Haven’t you tried the blood-letting therapy yet?

After 14 years since my daughter was diagnosed, the following are things I have to continue to remind myself:

1- Give yourself some credit. Progress with Autism is two steps forward, one step back. Because we are wrapped up in the day-to-day, it is often tough to see how far we have come. Just managing a household with an autistic child alone is more than most parents sign up for.

2- Don’t worry about what everyone else is doing.  Besides parenting an autistic child, you are managing your life – family, relationships, faith, career, health, finances. That “super-parent” you may be comparing yourself to is sacrificing something.

3- Trying to do too much comes at a price. There is progress being made everyday with autism research. By all means, try new therapies, but too much at once can make it hard to see what is working and what is not. In addition, nothing replaces the greatest therapy of all; a secure and loving home life. Although it might not be what we expected, it is still our child’s childhood experience that they are living right now.

4- Understand your own motives. Self doubt is our enemy. The way to defeat it is have a clear understanding of our reason and our emotions and priorities. Both logic and emotions are valid, both have a legitimate role in decision making. Confidence comes from consciousness how we arrive at decisions.

5- Take note of how you arrive at decisions. When looking back on things we have done (or did not do), we need to remember that resources (i.e. time, money, knowledge, support, mental clarity, energy) are limited and availability varies. Regret comes when we question what we were thinking at the time we make a choice. “Hindsight is 20/20”, we can’t predict the future nor can we relive the past.

6 – You owe it to your family to take care of yourself. Living a life with the constant worry that we “should” be doing something other than what we are doing right now is no way to live. Doing things that we enjoy doing, gives us rest and make our lives fulfilling make us better. Focusing on things that we are good at and gain us recognition can be energizing. Allowing ourselves to deal with the grief that comes with autism is important.

7- Have a sounding board. We can’t underestimate how validating it is to have someone there to work through our thoughts. Recalling conversations we have had as we have arrived at decisions can be reassuring and easier than remember what we were thinking in past decisions and actions.

8- Be leery of critics. There is no room in our life for Monday morning quarterbacks and back-seat drivers. Once we give too much consideration to our critics, we second-guess ourselves and it becomes a distraction.We will never get rid of them. Many know no other way, its not our job to fix them and can’t afford to try. The best defense for criticism comes from within ourselves. Having confidence in the direction we are going makes all the difference.

9- Prioritize, don’t react. Autism is a marathon, not a sprint, as is our whole life. If we let our emotions, our fears and our critics guide us, we will be pulled in every possible direction. Our expectations for ourselves become unreasonable and it wears us down. We need to keep our eyes on the horizon.

10- Let go of the schedule. Your child’s life is not on the same schedule as most kids. It does not end at 18 when they become a legal adult, nor does their progress. It can be comforting to reassure ourselves that we will be there for our child for the rest of our lives.



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