Introduction to Autism, Part 2: Next Steps After a Childhood Diagnosis

Reframing Autism Autistic Identity... 1024 X 576px (12)

Written by Dr Melanie Heyworth

As I sat down this morning to write this piece, I began reflecting on what would have made a positive difference to me when my eldest child received their diagnosis.

Sure, at the time, I would have deeply appreciated my child’s relatively lacklustre and apathetic paediatrician offering me some (any!) support and guidance. (He instead dismissed us saying that he “could do nothing more” unless I wanted to “medicate” my child’s “OCD behaviours”.)

But looking back on that experience, I suspect that any support or guidance he would have offered would not have been helpful, and may, in fact, have been damaging.

I wasn’t particularly shocked at my child’s diagnosis, nor was I upset, although I know many parents who have felt both to varying degrees. I think I was helped by the fact that my child’s diagnosis was not unexpected.

I do remember, however, being panicked. Guilty. Deeply anxious. Overwhelmed. Uncertain of what came next, what should be done next, what could be done next. Lost. Lonely and alone.

I had a feeling of crushing, awful pressure, of suffocating realisation, that my child’s future – their happiness and success and independence – rested on the decisions and choices I would make for them without adequate knowledge or insight.

For me, that was what was totally devastating: the feeling of helplessness and hopelessness, not that my child was Autistic, but that I needed to parent them without the slightest inkling of what successfully parenting an Autistic child might entail or look like. The responsibility of that weighed so heavily on me.

I think had that pressure been lifted, I might actually have made better choices than I ultimately did. I ascribe to Maya Angelou’s “know better, do better” mantra, so I try not to regret my early decisions and instead to see them as important learning, but looking back I wish I had known better, sooner.

So, I hope that I can alleviate some of those burdens for you with my “top five tips” for parents of newly diagnosed Autistic children, to help you on your journey.

Tip 1. Pause and hold space

I say “pause” but I probably really mean “stop”.

Part of the pressure we feel as parents is that we have to make up for what is constructed as “lost time”: time that we didn’t know our child was Autistic, time that we could have been doing things differently to set them up for success, time that we – or they – could have been learning.

Part of the pressure is around funding. For those in Australia, applying for an NDIS funding package for your child’s therapies and other supports is an extended and time-consuming process, best started quickly, we’re told.

Part is in the perpetuation of the “developmental window” fallacy. We’re told that there is a crucial developmental window during which early interventions will have greatest success at making our Autistic children appear less Autistic …

So, just … stop.

Your child – your gorgeous, perfect, unique, lovable and loved child – is exactly the same today, as they were yesterday. Nothing needs to be done today, or tomorrow, or next week. Nothing has changed. Your child was born Autistic. Just because today you have a word to describe some of their unusual behaviours and differences, doesn’t make them any different to the person they were yesterday.

So, you have time. Actually, you have a lifetime.

You have the time to sit with your child’s identity (psychologists call it “holding space”), and embrace it with the wholehearted, unconditional acceptance that it (and your child) deserves.

There are two key elements to how we might “hold space” for (and with) our child’s identity.

First, we take the time simply to be with the information in a loving, nonjudgmental, and compassionate way that acknowledges our own discomfort and feelings without trying to change or do anything about ourselves, or (more importantly) our child.

Second, we are present with our child’s identity in a context of unconditional, validating loving kindness that is not about fixing or justifying. This is the first step to a kind of radical acceptance of your child that will set you both up for success and joy.

In fact, this is your most important first job.

It is worth knowing, then, that there is no developmental window. How awful to think that at some arbitrary age we stop growing, maturing, developing, learning, having reached the ceiling of who we are and what we can achieve?

And if there is no developmental window, there is no rush.

Actually, early interventions (at least the ones that are quoted in reference to a “developmental window of opportunity”) are often aimed at “normalising” our Autistic children, at helping them to learn to suppress and bury their authentic selves.

So, at the very least, take the time to stop and consider if that is really what is best for your child, before charging into exposing them to an intervention that may have a lifelong detrimental mental health impact.

Tip 2. Seek out Autistic voices

Next, seek out Autistic expertise and knowledge.

It is quite likely that you’ve been told that certain interventions – the ones you need to rush into to have the “best” results, the ones that are timebound by some “developmental window” – are “evidence-based” and will help your child “function” better and lead a more “normal” life.

But very often the professional expertise offered by paediatricians and psychiatrists, psychologists and therapists, is divorced from the lived experience and reality of Autistic people themselves. Before you embark on any therapies or interventions, or make any decisions, make sure you access Autistic experiences.

There is no substitute for Autistic experiential knowledge. And there is no doubt that Autistic people are the experts in living Autistically. If you have questions, it is the Autistic community who are best placed to answer them. If you want to understand, the Autistic community have the experiences to help you to empathise with your child.

There are plenty of ways to access Autistic voices, however they communicate. Many Autistic individuals, both traditionally and non-traditionally communicating, use blogs, Facebook pages, and even books to explicate their experiences. A handy list of Autistic-authored resources can be found here.

Tip 3. Look to yourself

Tip 3 is a complex one, and probably deserves a blog all of its own. But in brief, there are three elements of “looking to yourself” that I want to explain.

The first is to look to yourself as potentially Autistic.

As you read Autistic experiences, you will no doubt come across the lives and reflections of parents just like you who discovered their own Autistic identity after their child’s identification. Although this will not apply to every parent with an Autistic child, countless parents have resonated so deeply with the histories and lives of other late-diagnosed Autistic individuals that they cannot help but see how an Autistic identity might explain so many of their own experiences. And these parents very often find a profound sense of liberation in discovering so fundamental a part of themselves, and one that gives meaning to their life’s experiences.

Fundamentally, Autism is genetic. So, if your child is Autistic, it isn’t too far a stretch to entertain the possibility that you are too.

The second is to seek the professional support of a psychologist.

One of the most compelling predictors of how close your relationship will be with your Autistic child is how you are able to relate to them and develop “attachment” with them. (Google “attachment theory” if you’re interested in reading more.) Ideally, we are all striving for secure attachments. For children, a secure attachment is when they feel safe, seen, soothed and secure (according to Dan Siegel and Tina Payne Bryson), which in turn fosters a resilient, self-determined, curious and social mindset.

We know, however, that children and their parents develop secure attachment when the parent has insight, understanding and awareness of their own history. As psychologist Debra Campbell puts it, in order to build secure attachment with our children, as parents we need to assess “why things worked out as they did, why you are how you are … It’s about assessing the depths and locations of the scars in your inner landscape so you don’t keep falling into those same patterns” of attachment you might have experienced as a child yourself.

In other words, look to yourself before you begin working on building a secure relationship with your Autistic child.

The third is to acknowledge that you undoubtedly – as we all do – come to the news of your child’s Autistic identity with a healthy dose of internalised and probably unacknowledged ableism.

Ableism is the prejudice we hold against individuals with disabilities. It is our inner voice of discrimination that shrinks from using the words “Autistic” and “disability”, because at heart we think that disabled people – Autistic people – need fixing, that they are inferior. It is the unconscious bias we hold that prompts us to want our child to speak using their voice, not use a device or sign language, to want our child to stop flapping and spinning and be “normal”, to see our child as a perfect “whole” child within a damaged outer shell of Autism. (For more on this, read Maxfield Sparrow’s excellent 2017 piece, “Autism is not a shell surrounding a normal child”.)

We cannot change these prejudices if we do not acknowledge their existence. We cannot challenge our own inner biases without conscious awareness and action.

Tip 4. Respectful goal-setting

It’s worth noting that you need to prepare yourself for a new conversation as a parent of an Autistic child: the goals conversation. It’s pretty unusual for parents to be asked what their “goals” are for their non-autistic child, but somehow your child’s medical and allied health team are going to be preoccupied with your goals for your child, as are their school (or other educational institution), their therapists, and the bodies that provide you with funding.

So, familiarise yourself with some ways of setting good, respectful goals. These are likely not to be the norm if you accept the goals others suggest for your child, so putting some proactive thought into what will work for you will serve you well.

One dependable way to ensure that goal-setting translates into goal achievement (which is good for your and your child’s wellbeing) is by involving your child as much as possible in all conversations about the goals they might have for themselves.

Autistic (actually, all) children are most motivated to achieve a goal when that goal is meaningful and relevant to them and to their lived experience.

My experience (as an Autistic individual, a parent of Autistic individuals, and in working with the Autistic community) is that any goal that is strongly informed by the child and is made with their input and consent, will:

more likely be achieved, building and fostering child and parental self-efficacy, confidence and motivation,
take considerably less time to achieve (and with considerably less effort required from all parties involved),
be generalised much more easily outside of the specific context in which it was learnt,
be much more likely to be maintained, and therefore achievements are deep rather than superficial and temporary, and/or
be less likely to be resisted by your child, preserving your secure attachment.

That means you need to consider what is your goal for your child, versus what their goal for themselves might be. It ultimately means you might need to pause on your desire for your child to be toilet-trained, an independent sleeper, or to tie shoelaces, if those goals are not motivating for your child at this stage.