When Should Parents Stop Researching Autism?

Question: Can a Parent Become Too Focused on Autism?

Can a parent be too focused on autism? Every since our 3 year old was diagnosed with autism last year, my wife hasn't gotten a full night's sleep. After she gets our son to bed, she gets on the computer and doesn't get off until long after I am asleep on an average night. She's always researching the same thing: autism. She just can't stop. Help me understand this.

Please help me to help her. I am worried about my son too, but this seems extreme.

Answer: From Dr. Robert Naseef:

You sound like a good husband to your wife and father to your son. You are certainly trying hard, doing many good things, and being sensitive to the situation. My first thought is just a question. I wonder what would happen if you offered to do some of the research? Even if you insisted that you needed to become a part of it. I wonder if that would take some of the pressure off your partner in what is certainly a very trying situation.

Even more important to realize is that you and your family are not alone. The scene you describe is very common in families of children who have been diagnosed with autism, as well as families who have children with Down Syndrome, Cerebral Palsy, etc. It is normal and natural in these times of the Internet. As much as I rely on the Internet myself, I am glad in many ways that it didn’t exist when my son was diagnosed in the early 1980’s.

I was obsessed with finding out all I could and doing all I could for my son, but since there was no Internet, trips to university libraries had to suffice. The amount of information available was not as overwhelming in volume and therefore not as confusing.

The famous British child psychiatrist, D.W.

Winnicott wrote that "Primary maternal preoccupation is a consuming attachment to one's baby, a normal sickness from which most mothers recover." He was talking about the mothers of typical children, who presumably have a little less to be preoccupied with on the average. So what you describe is normal and natural, but it is not comfortable and it can become unhealthy if one does not get enough sleep, if one's appetite becomes impacted, if life lacks any joy, etc. So a mother is often obsessed with her child’s needs and barely able to think about anything else and feeling guilty about that. Fathers often feel left out and powerless to rescue their families and cheer up their spouses. So parents can benefit from professional guidance in sorting out the tons of information available and in staying balanced for the long haul.

People often ask me how to deal with their obsession with autism, I recommend taking short breaks to start. So possibly, you could offer to give your wife a break and look up something she wanted to know and then take a break together some time soon.

From Dr. Cindy Ariel:

There is often a bond that forms in infancy and childhood between mother and child that feels excluding to the father.

Your wife is trying to take care of your son in the best way she can right now. It is a very common response for at least one parent, usually the mom, to throw themselves completely into the diagnosis; to learn everything they can to help their child. This is the way your wife is coping with the diagnosis and with the perceived threats that it can represent to your child, your family, and to her motherhood.

While your wife's reaction may be extreme right now, over time it should lessen as she comes to know your child and autism more fully. She will come to a greater understanding of how to put the best resources in place for your child to reach his highest potential and to a greater ability to step back a little and watch your child grow within that framework.

There is a plethora of information and it can be very confusing. Your wife is actually doing the very important research and work that she will need in order to be the kind of advocate your son will need throughout his childhood. You may need to be prepared for this to last into his early school years and then to ebb and flow with each period of growth or transition that your son and you, as parents, need to face.

It is very positive that there is a balance between the two of you in the household; that you like to play with your son and have typical experiences with him while your wife is doing her reading and research. It may help for you to join your wife in some of her concerns and research: to look some things up, to pick up a related book, to listen to her worries. Perhaps by entering into her circle and involving yourself in these ways she will feel validated or supported and able to let go even just a little. If you work with her on this, it can double the effectiveness so perhaps she won’t feel the guilt and concern of many in this situation that doing anything other than the constant research and advocacy will result in lost or wasted time in helping your child. This may free her up just a little so that she can have some play time too. She needs it and so does your son.

Robert Naseef, Ph.D., and Cindy Ariel, Ph.D., are the co-editors of "Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, and Professionals Share Their Wisdom" (2006). 

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