Some of the most challenging moments raising children with Autism occur in the everyday moments of transition from one activity to another, when sudden changes occur to a previously determined and expected routine or when sensory overload gets the better of the child (or parent). How do these parents maintain strength to deal with the daily struggles? How do these parents recover from explosive situations and move forward ? How can parents improve their own mental health?
Research shows that out of all of the childhood illnesses and disorders, Autism Spectrum Disorder causes the most parent stress and burnout. Why? Because of the scattered developmental profile and regressions that occur in individuals with ASD. It is common for children with ASD to slide forward and backward on a continuum of developmental abilities. The amount of repetition it takes to teach new skills can be exhausting. Somehow, parents continue to forge ahead, cope, set new goals and persevere. But how?
In my experience living and working in the field of ASD, I see common threads among parents who seem to cope better than others and I would like to take this moment to share these insights.
- Using Humor – Laughter really is the best medicine. Laughing releases ‘feel good’ endorphins in the body and helps to reduce feelings of stress. Look for humor in otherwise stressful situations. Perception and interpretation are keys here. If you interpret a situation as negative, chances are you will feel bad. If you can find the ‘silver lining’ in situations it will help to diffuse the heavy emotions that are commonly experienced by parents with children with ASD.
- Patience – Developing patience becomes an absolute NECESSITY when raising a child with ASD. Parents typically discover over time that an enormous amount of patience is required in order to maintain a sense of sanity. How does a parent learn how to be patient? (1) Change expectations about what is to be accomplished, (2) Set realistic goals daily, (3) Get organized and create a system of how to manage responsibilities, (4) Avoid self-criticism and negative self-talk when things don’t go as planned, (5) Be flexible when all else fails.
- Depersonalization – Now I’m not referring to derealization or separating oneself from reality to exist in some kind of delusional state of mind. What I am referring to here is that parents who seem to cope better tend to be the ones who understand and accept that their child’s behavior is not a direct expression of hatred towards the parent. These parents don’t take their children’s behaviors ‘personally.’ These parents are able to reflect on the child’s developmental level, current environmental challenges in any given situation and can interpret the child’s challenging behavior as a difficulty that the child is having within him or herself, not an emotional expression of anger toward the parent(s). This allows a parent to maintain composure and calm in difficult moments. Having the ability to remain calm when a child is in the ‘throws of a full-blown meltdown’ will make the difference entirely on that child’s future behavior in a similar situation.
- Supports – This can be further subdivided into Family, Friendships, Work Relationships, Respite and Professional Support. (1) Family – a complicated dynamic for most people. Not everyone has family support but if you do, try to utilize it. (2) Friends – rely on friends to debrief about your day. Plan to go out and have fun. Many parents find that older friendships prior to having children may fade out simply because of the difficulties in integrating the child with ASD into new environments without struggling with behaviors. These behaviors are not always understood by friends, or simply the fear of a child having a meltdown in a friend’s home is enough of a deterrant for a parent to avoid bringing the child there. Developing friendships with other parents who share similar experiences can be very enlightening. (3) Work Relationships – open communication with one’s boss or management to come to an agreement about how to facilitate flexibility in a work schedule (to accommodate for the child’s needs which often pull parents away from work out of necessity). (4) Respite – Access it, find it, post it on kijiji, talk to your child’s school about hiring an Education Assistant, post ads at the university. Get a break for yourself by getting some childcare in place to allow you to get away for a couple of hours to do something for yourself. Access local Autism Groups and develop friendships with other parents who understand your life and circumstances because these challenges are often shared experiences. (5) Professional Support – This support may be to assist the parent in improving capacity to cope such as a family physician to discuss mental health needs of the parent or a therapist to provide counseling. A common theme in accessing support is to develop an ability to clearly communicate you and your child’s needs with those who have the resources to support your family.
- Living in the Moment – Slowing down and focusing on how to get through this week is a better approach than worrying if your child with attend university, get married or move out of the house. Try not to let your thoughts stray too far into the future. Focus on getting through this week in a positive way.
- Recognizing You Are Human – Many parents with children with ASD feel overwhelmed with the responsibility of dealing with the various needs of the child as well as the ‘other’ typical daily activities (work, housework, yardwork, etc.). Being able to shuffle priorities on a daily and sometimes hourly basis is necessary. Trying to be a superhero in all scenarios will lead you to a path of burnout faster than if you take moments to pause and realize that you are only human.
- Avoid Comparing Apples to Oranges – Comparing your child to any other child (whether that other child has ASD or not) in terms of developmental milestones or functional abilities may lead to feelings of sadness or frustration. It’s natural to observe and notice differences in your child versus other neurotypical children. The key is to avoid dwelling on these differences. No two people with ASD are exactly alike. Focus on your child’s strengths and how to build upon them.