Recently I had the privilege of running a support group with parents of autistic children. I expected a group of parents with children ranging from around 2 to 5 years since I assumed that that would be hardest period considering acceptance of diagnosis, finding a school and toilet training.
OH BOY WAS I IN FOR A SURPRISE!
For yes there were the parents of younger children as I expected but also more than half the group were parents of teenagers. I must confess I am very theoretical, and the theory showed that symptoms of autism improve with age and parents are more equipped to deal with what is to come. Also, I assumed with time comes acceptance and thus it could only get easier. However, sitting and listening to these parents’ experiences filled me with awe on how people cope and the courage that raising a child on the spectrum entails.
Any parent of a teenager will tell you that raising a teen in this era is not for the faint hearted. Between technology, peer pressure, elevated emotions and raging hormones your sweet darling children become something else. It is a phase in which they struggle to form their identity and prefer their friends to you (the horror!). Their limbic system that is the part of the brain that controls emotions develops first and the last part of the brain to catch up with the growth spurt is the prefrontal cortex which handles planning, organising and rational decision making (now you know why they behave the way they do!!!).
Now to that already hectic mix add a teenager on the spectrum who wants to push the boundaries, is not just struggling with hormones but doesn’t fully understand the social dynamics and emotions are already hard to contain anyway. Parents though may have accepted the diagnosis still struggle with the new bouts of tantrums which are much harder to contain for now its not from a little child but a person with a body of an adult.
Especially in boys, parents complained of elevated aggression and physical acting out. My heart broke when I saw parents with bruises and bites for some of the autistic teens struggled so much with their emotions that when their parents tried to contain them they were bitten and punched.
Now please do not get me wrong, this is not necessary for all teenagers on the spectrum for their severity of symptoms, personality, temperament and context would largely affect how they experience this stage. However, I am writing this blog with the intent of bringing into awareness not just the struggle but the ability to cope and courage too. For many of these parents taught me what no book could, and that was the power of love and the ability to cope. Many of these parents were tired for yes, they were human, but they were there ready to share their stories, advice and give hope to the other parents. They loved their children and would do whatever it took to help them through this phase. Within the group we discussed the importance of self-care, creating safe spaces, realistic expectations, parents own grief, how to stay centred yourself and how to contain by modelling the desired behaviour. By sharing, the burden was reduced, and parents seemed rejuvenated to try again.
However, looking at their issues from a broader perspective factors like lack of resources both structurally and in terms of skilled human resources are lacking and parents of children with autism face many hardships on their own. From a human rights perspective; respite care, skilled facilitators, inclusive education and accommodating spaces should be provided to assist parents and prevent these feelings of isolation, burnout and extreme frustration. In an ideal world counselling, psychoeducational and support groups should be available at a primary level and accessible to all. However due to the huge treatment gap and lack of government funding these are not catered for. Simply being an observer of these factors made me feel helpless and angry, which gave me a small glimpse of what these parents must be faced with everyday.
Nonetheless, hope springs eternal for many NGO’s like Action in Autism are playing their part to advocate for these parents and another good news is that teenagers do eventually pass that phase. Also having a child with autism appears to teach some universal messages, the ones I learnt were: LOVE NEEDS NO WORDS and BEING ABLE TO SEE THE WORLD THROUGH A DIFFERENT PERSPECTIVE CAN BE A BLESSING. So, this blog is for the parents of every teen especially those on the spectrum, that try every day to do their best and never get the credit…Be blessed in the knowledge that you are a hero!