When a parent or family receive the diagnosis of Autism Spectrum Disorder they firstly have to process and understand what this diagnosis means for them and their child. This is often an emotional and individual journey of a lifetime. The next thoughts are often what do I need to do to help my child achieve their potential and make each day the best it can be? What skills do I need to teach my child that are not coming naturally to them? What do I need to do so that they feel accepted and included and grow with confidence and self-esteem? This is the moment a family springs into “intervention” mode.
Intervention mode means you have to navigate which allied health disciplines, groups or interventions will best be able to work with and help your child achieve these goals or build their skills. You then have to navigate the referral and perhaps waiting list processes. Often a multi-disciplinary approach is recommended, which means multiple clinicians from different disciplines working with your child. This adds up to fitting in multiple appointments around home and kindy/school life per week or fortnight.
The next step is to go through an exhausting process of discussing your concerns about your child’s development and behaviour with clinicians and what this looks like, is triggered by and how it is impacting on your child or wider circle. Next comes the discussion of what skills sets need to be worked on in order to improve their social, communication or emotional development, resilience and coping ability and how this will be done. There is often discussion about how to respond to certain behaviours or difficulties, how to manage meltdowns, how to increase motivation, how to use reward systems, how to set up visual tools and supports, how to use sensory tools… and the list goes on.
The whole family is being asked to learn a whole new way of teaching and responding, of giving instructions, readjusting expectations and learning how the ASD brain works. At times, it feels like the whole house is living in the ASD world or perhaps even walking on eggshells.
Understandably, there is the financial pressure to fund these appointments. Even more understandably, there is the emotional pressure to keep up with and fit in appointments, to implement the strategies, to do the homework clinicians are asking you to do whilst still keeping up with daily life, work and other commitments.
All of this is done because your child’s future is priority and you will do whatever it takes to help them lead the most successful life possible. You will do whatever it takes to build their skills, confidence and happiness. BUT I want to be a voice that lets parents, caregivers and families know that when you write this journey down the way we have just done, wow… it is big. There is a lot going on and it has probably all happened very quickly from the moment you discovered the diagnosis. You must be absolutely exhausted.
To so many of us, and to your children, you are superheroes. There will be days that you will need to do your superhero stance (if you’re a Grey’s Anatomy fan as we are, you will completely understand the power of this!) to get through the morning or even the day. We know you can do this as we know you are already doing it, but I want you to remember one key thing. Happiness is a therapy goal too. It is just as important as any other goal. It is so important to take breaks from therapy when needed, to be selfish on some days, to retreat sometimes, to let a battle go because it is not important today, to let you child spend 10 hours on their obsession if you need a peaceful day, to not go to that social event today because you do not have the energy! It is important to have balance between being a superhero but also making sure you continue to find your own and other family member’s happiness. Only take on what is feasible, what is realistic, what is humanly possible. You are the glue and if you are not finding happiness and joy for both yourself and your child in the week, then we are not meeting a basic human need. Your child needs to find happiness and joy too. They need to be taking breaks from therapy and doing crazy, wonderful, quirky things that have nothing to do with an allied health therapy goal or a therapy session or even to do with ASD!
So never down play that happiness will always be a goal as well. Isn’t that true for any family?