Telling your child that they are autistic. Part 3.2: But… (continued)

Continuing on from Part 3.1, here is one more concern that parents might have towards telling their child that they are autistic (the child that is, not the parent, though the latter might be the case as well!). I decided that dedicating an entire blog post to this one concern suitably reflects just how important this one is, and my own struggles in this area. As such I intend to write more fully on this topic one day however here is the concern in a nutshell.

But … it’s a label.

Correct, autism is a label. But what does that mean? And does it mean what you think it means? Here are three potential meanings and their responses.

1. Labels are damaging.

At one time labels were a ‘black spot’ on a child’s record. They followed you through life and were a source of shame. Yes, they brought medical help, but also a lot of stigma. My response to this is that times have changed. Even as I write this I know it sounds clichéd and smacks of the rebelliousness of youth (not that I’m young anymore) but in fact, I have enormous respect for history and of listening to the wisdom and experience of those who came before me. Yet I disagree with this notion; labels really are no longer a bad thing. There is still stigma attached to being different, but being labelled is one of the only ways to receive understanding and help. The only language government and education departments speak in is that of labels: ‘If you have autism then we will give you $$$. If you do not have autism then you will get nothing.’ Getting to the crux of the matter, the only way to access therapy in Australia is if you have a stack of money, and so you need government support. The public health care system is often neither free nor accessible within the time frame that it is needed. Besides this, the autism label opens doors of understanding in schools and the community. These doors may not be open very wide however they are at least open which is very different to a decade ago. Workplaces are also getting on-board (slowly and surely) as they learn that sometimes the ‘socially-inept’ person is a far better and more loyal worker than those who enjoy standing around chatting to their co-workers all day. To summarise, while this label can still bring stigma and discrimination, it is really the only way an autistic person can access the help and support and understanding that is needed to live in this sometimes hostile world.

2. Labels aren’t always necessary.

In other words, can you get around ‘treating’ different aspect of autism without actually calling it autism? An interesting question. Autism is technically just a specific combination of characteristics. Every person has a different combination, and varying degrees of ‘severity’ of each. From this perspective you could separate them out and say, ‘Hi, my name is Gertrude and I struggle with restrictive behaviours, and sensory stuff, and social and communication problems.’ I guess this would successfully avoid labelling young Gertrude and still acknowledge her struggles but will it lead to the same results as being diagnosed autistic?

If you separate the different components of autism into individual characteristics then you’re inclined to see autism as NDIS (and the majority of the world) currently views it: a bunch of deficits. While there are many challenges that come with NDIS, there are also definite strengths (mind you, sometimes these can be hard to spot). Separation doesn’t really allow these strengths to be identified or accentuated. As a unified concept a person can have a more balanced view towards autism: it’s not good, it’s not bad – it consists of both strengths and challenges.

Separation also leads to missing common characteristics that aren’t a part of the official diagnosis, such executive functioning differences and being detailed oriented, as well as common co-occurrences such as ADHD and anxiety. It reminds me of the parable of the blind men and the elephant, where they each took a section of an elephant and attempted to describe their individual section to the others. Suffice to say it didn’t work, they argued a lot, and never quite figured out what an elephant looked like. While the original meaning of the parable differs to the point I am making (especially as this has blog post nothing to do with elephants!), the actual analogy makes sense. If you were to take apart autism and consider each component separately, you will miss vital aspects of autism as a whole, including, as I said, common strengths and challenges that are not found in the actual diagnosis but are officially recognised as part of the lived experiences of the autistic people themselves.

3. Labels determine identity.

I actually agree that this is a problem. There are currently two main views towards autism: you either are autistic (identity-first), or you have autism (person-first). Identity-first embraces autism as part of ones identity that often overrides all other aspects of belief, personality traits, preferences, etc., and is a more recent movement led primarily by autistic people themselves. Person-first states that autism is separate from who a person truly is (as in, it’s an addition to who they are) and is endorsed by the education and professional sector. Thus one is autism from within and one is autism from without. In my opinion, both are right and both are wrong.

            The world is trending towards the notion that identity can be seen as absolute truth. ‘If you think you are then you are’. Unfortunately those identities are based upon feelings, and feelings are fickle. Suddenly the autistic identity becomes a self-fulfilling prophecy. The identity-first autistic states, ‘Autism says that I’m not very good at relating to others and you know what, I don’t feel like being friendly today, so I’m just going to ignore that person.’ Or, ‘Part of my autism is that I’m a sensory seeker and LOVE loud noises so I’m going to turn the sound up really loud and not care what others say, because this is just a part of who I am!’ Actually it just sounds like you’re being rude and selfish.

In this way the desire to remove autism as a core identifying feature of a person (as would the person-first faction would state) is undermining the lived experience of the autistic person. Autism IS a huge part of someone’s world because it affects so much of their daily life, sometimes positively, sometimes negatively. It cannot be separated from them, thrown off one day and put on the next. It is life-long and, in the medical sense of the word, ‘incurable’. But not everyone (including autistic people themselves) appreciates this nor the effects autism has on them personally and so some would happily remove the presence of autism in their lives. Their experience of autism is one of pain, frustration and loss, and they cannot see any good in it, so the more they can distance themselves from it the better. These testimonies must also be upheld.

For these reasons I believe a balance must be made between the identity-first and person-first view and thus I propose a third option, one which sympathises with both perspectives and synthesises the two beautifully. The Word of God clearly states that I was knitted together specifically, fearfully and wonderfully made. His eyes saw my unformed body and all of my days were written in His book before I was born. God does not make mistakes, and I am His child. I was created in His image. This is where my identity lies. Whether I feel it or not, I know that it is true, and allow this to determine my actions and my perceptions. I will attempt to tackle this topic my in depth at a later time but suffice to say that I view the Christian identity as providing the framework from which the autistic identity is worked out. The latter is still acknowledged as very real and very affecting, but it is firmly placed within the boundaries of the Christian worldview. And this Christian worldview states that, though there is pain in the world this pain is meaningful. Though there is suffering, this suffering is not without cause. God is in Sovereign and there is a reason for a person to be born with autism. God also created each of us in His image, regardless of our neurology.

It will not matter that your child has the label of autistic, or if you prefer the language of identity-first or person-first. As your child’s parent and hopefully the biggest influence in their life, you are the one who will show them that their identity can be found in the same place that every single human beings can be found: as image-bearers of God. And God does not make mistakes.

I hope this series ‘Telling your child that they are autistic’ has helped you understand the why, how, when, and address any concerns you may have. If, after all of this, you are still reticent towards the idea or outright disagree, then please pray and keep praying. If you have weighed up the pros and cons and still determine that it is not in your child’s best interest then that is your choice. Or perhaps the reason you feel this way is because for whatever reason God does not want you to tell them, or at least tell them yet. Who am I to argue with God’s Will? And if you feel like your concern was not addressed, or you have other ideas to add to the discussion then feel free to keep the conversation going.