Autism’s Little Secret – Part 1 of 6

If you or someone you love has a child diagnosed with autism, it is likely you have had a lot of information dumped upon you in a very short period of time following a diagnosis. Yet, from my own experience and from what I have seen with other people, there are a few things that the experts neglect to tell us. In everyone’s haste to help your child, including your own, there are constant reminders that “early intervention is critical” for your child’s progress. While early intervention is important, the implications of this can detract from your equally important responsibilities; taking care of yourself and your entire family while at the same time figuring out the best plan to address the needs of your autistic child.

If you are a parent of any autistic child, I hope this message can offer some level of comfort to you as it is a reminder to GIVE YOURSELF A BREAK. What you are undergoing is not easy. When you experience anything that is on a similar level as autism, especially when it has to do with the welfare of your child, as far a stress is concerned it is on par with nearly any trauma you can experience (e.g. death of a loved one, injury, etc). Traumatic events in one’s life in the simplest terms are moments in time where the future becomes uncertain. When people have that level of change in their life, they tend to grieve. With autism, the grieving process is particularly difficult because it takes a considerable amount of time to receive any level of predictability in the outcome. Every situation is unique as is every outcome.

To illustrate, in most other traumatic events in one’s life, say if God forbid your child lost a limb, you would know fairly quickly that the limb was gone, you would have the opportunity to grieve the event and, in a reasonable amount of time, address what you are going to do about it, accept it and move on. Autism is quite different. Every child is different, the amount of information you need to process is overwhelming. The noise is deafening from the shouts of countless “experts” claiming the next great cure or treatment. Following the rapid increase in diagnoses, Autism has become big business. We, as parents, have to eventually come to grips with the idea that we will never recieve 100% clear and definite prognosis for your child as progress is an ongoing endeavor. No matter what you do, it is almost impossible to escape the question you will have your mind as to whether you have done enough. You are not alone in this.

Here is the DANGEROUS PART and how, as with nearly any traumatic event in people’s life, the process of grieving can tear families apart. Grieving causes people to behave in ways that they normally would not. While the 5 stages of grief (Denial, Anger, Bargaining, Depression, Acceptance) remain fairly consistent, the ways and amount of time for which people respond to them is unique to them. This is on a conscious and subconscious level. It changes how you respond to other aspects of your life. It affects the way you communicate, how you react to stressors, how you problem solve and find resolutions to daily problems in life. It can change the way people view you and respond you. When you look at it that way, from the point of view of a spouse, a child, extended family, co-workers and friends, you can see that you yourself may be creating a change in their environment as well.

Much of the strain comes upon relationships when people are unable to recognize the results of grieving and adapt accordingly. From a relationship standpoint, both parties perceive that something has changed from what they are accustomed to as functionality of their relationship enters into unchartered territory. By understanding how grieving works, it becomes a bit clearer as to how it can affect a marital relationship. But to further elaborate, what about the relevance of grieving upon a parent-child relationship and the effect of marital problems upon a childhood experience? It is easy to see how one traumatic event can easily beget all new ones. Divorce can have a devastating impact upon the welfare of the individuals involved, our culture and play a role in the outcome of your efforts to address autism. I have a special place in my heart for the people who endure it.

The way you combat a negative result from grief is to be conscious that you are enduring it and that your thoughts and actions will result. In addition, understand that the people around you are likely grieving, too. Know how to recognize it, understand how it pertains to your life and when it may be too much to handle on your own. Information is power.

As a practice, I recommend you spend time contemplating what parts of your actions and decision making are derived from emotion and what parts are derived from reason. Do not discount the value of your emotions and that of the others in your life. Emotions are real and play legitimate role. Enroll others in the idea that they are a part of a difficult time that you are going through as you involved with a difficult time for them. The people you simply cannot enroll are that are best viewed as critics and need to be side-stepped. Grieve as a group, not on your own.

For families, I call the time immediately following diagnosis as “triage time”. It is time to get an action plan in place, get a team of professionals enrolled and a progressive routine, then buy yourself some space and time to take care of your family and make sure you are ready to endure the long haul before chasing after the next best treatment for autism. A secure and comfortable family life is just as important to your child as any therapy and you owe that to them, your family and yourself.

This, I believe, is the secret that needs to be let out as we welcome new parents into the community of autism. The divorce rate among families with autism is extremely high.