Friday, July 22, 2011

Autism Families: Seeking Support Is A Sign Of Family Health

Laura Shumaker

I was a part time pharmaceutical rep with a one and a half year old at home the first time I got really sick, sicker than I had ever been. I remember walking up a flight of stairs carrying my detail bag full of Advil and The Today Sponge (yes, we are talking 1989) and feeling so weak that I had to sit down until I felt strong enough to go down the stairs in search of a pay phone so I could call my husband.
"I think I need to go to the emergency room," I told him. I was diagnosed with a meningeal infection and was given IV antibiotics. It took me weeks to completely recover.

In a follow-up visit, I told my doctor: "This is so strange! I never get sick!"
At that visit, I didn't admit to him that I had been laying awake at night worrying about Matthew's development after noticing that he wasn't meeting the milestones of other children his age.

In the years that followed, Matthew was diagnosed with autism, I had two more sons...and I had a host of stress-related illnesses, including a case of pneumonia that landed me in the hospital for two weeks.
I knew all along that I needed help, but we were spending so much on Matthew's therapy that I couldn't justify the cost of a therapist for myself.

"This is just the way it is," I told myself, "Talking to someone is not going to change that. I just have to tough it out."

So I talked to family and friends, usually ending the conversation with, "But I'm fine, it could be so much worse."

I prayed, and I exercised when I wasn't sick. I didn't sleep. And I most certainly did not seek support outside of my family circle, and I hid or denied the stress I was experiencing to those within my family circle.

Then, when my son with autism was nine years old, it couldn't be hidden anymore. I had a public anxiety attack at a restaurant. That night, Matthew darted away from our table, and I barely caught him before he dashed, heedless, into a busy street. Holding him, I couldn't stop crying.

That is when I realized I needed a therapist to support me as the parent of a child with autism.

If you, the parent of a child with autism, are somewhere along this path but still have doubts about the value of psychological suppoort for you, read on to learn how my own defenses and misconceptions were debunked.

Defense: "This is just the way it is. Talking to someone is not going to change that. I just have to tough it out."

Yes, this is the way it is. Our children are the way they are. But we can change how we react to our children -- our children's behavior, and our children's condition.

Research studies indicate that there something uniquely stressful about raising a child with autism, even compared to parents of children with similar functional levels without autism.

"Sustained or chronic stress," says Esther Sternberg, MD, "leads to elevated hormones such as cortisol, the 'stress hormone', and reduced serotonin and other neurotransmitters in the brain, including dopamine, which has been linked to depression." Esther is a leading stress researcher and the chief of neuroendocrine immunology and behavior at the National Institute of Mental Health. "When these chemical systems are working normally, they regulate biological processes like sleep, appetite, energy, and sex drive, and permit expression of normal moods and emotions."
But it is most emphatically not true that "talking someone is not going to change your response to stress" or that "you just have to tough it out".

A good therapist can:
  1. Help you manage stress with common sense tools and solutions -- things that perhaps had not occurred to you, since you are overwhelmed by the relentlessness of caring for your child, your responsibilities elsewhere, or simply don't know where to look for help.
  2. Make you (and your spouse, and perhaps others in your family) aware of resources that are available to you. Did you know, for example, that your family might qualify for free respite care? Respite care is short term care that helps a family take a break from the daily routine and stress. It can be provided in the client's home or in a variety of out of home settings.
  3. Guide you (or your spouse, or another family member) about the need for more intensive intervention needs for both your family member with autism or others in the family circle. For example, if anxiety attacks or severe sleep disturbances are troubling you, another family member, or the person with autism, medication (pharmacological intervention) may be an appropriate approach.
Defense: "Talking to my family and my friends is all I need to handle our family situation"
Of course talking to your family and friends is important. However, they can only do so much. They may sympathize, but each of your family and friends have their own point of view. An impartial professional will give you a perspective that your family and friends cannot.

Defense: "I went to a therapist before, [and I hated it] [the therapist was useless] [etc]."
I have had these experiences. One therapist I went to told me in the first few minutes that she was going through a horrible divorce. Another asked me to do something I found silly: role play with an empty chair.

Defense: "I (we, our family) can't afford it."
I know. Therapists can be expensive. Our family is in Northern California, and my doctor recommended a therapist that was partially covered by our medical plan.

Some resources:
Elsewhere in the United States:

Another option: group therapy

Group therapy is an excellent option. One source for therapeutic groups is your child's pediatrician.
"I've used private therapy and the support of friends and family, says Susan Woolner, autism advocate and the mother of twins on the autism spectrum. "We also have a very strong autism parent network that supports other parents at breaking point. It works well because we've all been there and our support is unconditional, without judgment and we've all been there ourselves."
From the TPGA Editors for readers not in Northern California
  • Autism Speaks has an online nationwide Family Resources Services Guide. The TPGA editors have not evaluated the quality of resources available there, so this listing is not an endorsement, merely a referral
  • The American Psychological Association has a search engine to find licensed psychologists who treat families affected by Aspergers, autism, and persuasive developmental delay --not otherwise specified (PDD-NOS). The TPGA editors have not evaluated the quality of resources available there, so this listing is not an endorsement, merely a referral
  • There are many different approaches to therapy. Some may be work well for you, and not somebody else, and vise-versa. You can ask your doctor for a recommendation, or your friends, or even someone like a school psychologist.
  • It is appropriate to collect a few, or a lot, of recommendations from friends whose children face challenges like yours. It is also not only appropriate, but essential to interview therapists as to their therapeutic approach.
If your family is struggling,
please don't think you should "tough it out."

A previous version of this essay was posted at