Susan Senator

Here is an excerpt from Chapter 5 of The Autism Mom’s Survival Guide (for Dads, too!). Chapter 5 is called, “Improving Our Love Lives…Yes, That’s Important, Too!”

How do two people who are so many things to each
other (friend, partner, diaper changer, breadwinner, bread
baker, autism teammate) switch gears and go back to being
lovers? It is tough in any kind of family, but with autism in
the mix, the intimacy situation between spouses can be an
even bigger challenge. We’re worried about making it to various
appointments and are dealing with the constant educational
and therapeutic issues that crop up—everything from
learning yet again that a speech therapy session in school did
not happen to wondering how to toilet train, to getting a
child to sleep the whole night or to stop biting.
My friend NancyBea put it this way: “We are not weird
if we’re not having sex. It should be OK to admit that with
autism in the family it’s really hard to have any kind of
sex life.”

Of course it’s not weird if autism parents stop having sex, but
it’s also true that we don’t have to put this aspect of our lives on
hold either. Most of us don’t want to disconnect sexually from
our partners, but how do we prevent it, with such a lot on our
plates? We all know that a person’s sex drive can be buried under
family needs, long work hours, health and self-esteem issues,
even boredom. We also know that autism can compound any of
the above. However, once begun, sex is always worth the effort.
It is so oddly ironic that now, married and older, we think of sex
as something to work at, just as, when we’re young, it takes willpower
not to do it! Nevertheless, I do know that sex is and will
always be a key ingredient to my personal happiness, particularly
in a long-term relationship such as a marriage. But knowing
something and feeling it do not always go hand in hand,
especially with something as complex as sexuality, where there
can be many disconnects between what you want in your mind
and heart and what your body can do.

The psychologists and autism moms I contacted confirmed
that most of us are focused on just getting through
the day. In our harried lives, it is so easy just to let sexuality
go. Dr. Sharon Waller, a clinical psychologist in Brookline,
Massachusetts, says, “In my therapy sessions with autism
moms, it’s hard to get them to focus on themselves. The way
they use the time we have together is to talk about their child.
Their therapy is primarily about getting validation and support
for their decisions related to treatment options for their
child, the IEP process [Individualized Education Program],
and addressing behavioral challenges in their children. When
they do refer to their marriages, they might say in passing,
‘We never have sex anymore.’”

Dr. Waller points out that having children often strains
a marriage, whether the children have special needs or not.
“The research points to a decline in marital satisfaction once
children arrive,” she says. However, the difference autism
makes is in the frequency and intensity of the problems.
When raising an autistic child, challenges crop up again and
again, often unpredictably…

We owe it to ourselves to make sure that there’s room for
intimacy in our lives. No matter what we are up against, love
is a basic human need, necessary for our personal nourishment.
It is indeed possible to honor this need, but in order to
do so, we have to acknowledge that it is really OK , and not
selfish, to want this. So how can people dealing with autism
in their lives allow themselves personal pleasure and connection,
given their busy, demanding, and stressful lives?

The more I asked around, gently, about marital happiness
and thought about the frustrated responses I got, the more
I realized that the only way to approach these dilemmas at
all is to start with small, simple goals. Ned has often said to
me, “If you want to make a change, start with one easy thing
today.” In other words, set yourself up for success. If we go
around thinking of ourselves as “never having sex,” and if we
go right to “Oh, just forget it,” then that door will probably
stay closed longer than it has to…

[Want more? The book will be out March 30th! :-)]