The numbers currently tell us that 1 in 88 people are on the
autism spectrum. Although this is the
number used when organizations are raising funds for autism treatment and
research, it is misleading because it doesn’t convey the fact that autism affects
millions of people. Perhaps that’s because we look at autism as a
“condition” that affects only the individual when, in fact, autism creates a
dynamic that affects the entire family.
While therapeutic approaches and early intervention is
helpful, it isn’t enough. It isn’t enough because the supports that
exist today are focused on treating the individual, rather than supporting the
family unit. In order to move forward
and make a lasting impact for autistic individuals, we must create new systems
of support that include their family
members.
Parents of autistic children are not merely parents.
They’re caregivers, therapists, behavior specialists, and nurses. An article published online at SleepReview, The Journal for Sleep Specialists, discussed the overwhelming
number of autistic individuals with sleep disturbances. This means that parents are also not
sleeping, sometimes going months or even years without a full night of restful
sleep because of their child’s inability to sleep. It’s impossible to function in this capacity
without there being mental and physical effects, for both child and parent.
Aggression is a common behavior for many autistics. Lack of communication or low frustration
tolerance can trigger a child to act out aggressively. Parents must learn to manage meltdowns and
outbursts that can include property destruction and physical aggression. It is not uncommon for someone with autism to
bite, hit, kick or punch a parent during a meltdown. Siblings can also find themselves on the
receiving end and have difficulty understanding why their sibling is striking
out at them. Often this leads a parent
to turn to medications to help their child manage their moods, which often
involves a lengthy trial-and-error period of adjustment, as referenced by the
online article, Autism and Medication.
Because behavior can be challenging and unpredictable with
an autistic child, it often limits the ability of families to enjoy outings
together. It’s not uncommon to hear of
families that avoided restaurant dining for a 2-3-year stretch because their
child simply couldn’t handle being in a noisy, crowded restaurant. Usually outings must be planned in advance,
and kept as short as possible, to avoid a meltdown. Grocery shopping can be torture for both the
child and parent.
It is simply not responsible or reasonable to talk about
autism, to speak about supports and services, and to leave the family out of
the equation. Not only is the family
dynamic shaped by sleep disturbances, aggression, and unpredictability, there
are usually challenges with communication, toileting, and feeding issues. Family units need support. They need respite, which is often limited or
nonexistent. In my case, we have not had
one single hour of respite for over two years.
While it is not the autistic person’s “fault” for the
challenges that accompany autism, it is not the fault of the family that they
are thrown into a physically, emotionally, and mentally demanding position, and
often ill-equipped to meet the demands without some form of assistance. Over time, the demands erode a parent’s
ability to function.
That’s why it’s time to change the conversation about autism
support. It’s time we give a realistic
picture of the challenges faced by autistics and their family members. Autistic
people need their families, and families need respite so they can sleep and
recharge their drained batteries. They
need family therapy to address their feelings and thoughts about autism,
without judging or shaming them. We must
prop up the entire family unit to keep them from going under, from being swept
away by exhaustion and helplessness.
It’s time to talk about services that support the reality of
being an autistic family.
