Telling your child that they are autistic. Part 3.1: But…
If you read Parts 1 and 2 then hopefully you’ll understand the primary reasons why I think it’s a good idea to tell your child that they are autistic. It occurs to me that you might have a lot of concerns (and perhaps some disagreement), so I decided that I’d address as many ‘Buts’ as I can think of. If you have any that are not listed then why not get in contact and we can have a discussion? Perhaps I’ll even amend this list to include them. To do justice to these concerns I have broken it up over 2 blog posts (hence my clever titles of Part 3.1 and 3.2) and have placed them in no particular order of importance or authority.
But … it will make them feel different.
In Part 1 I described how child autistics might experience the world. I say ‘might’ because if they are in an amazingly inclusive and sheltered environment then there is a possibility that they’ve got no idea of any differences between them and others. But most will, at some point, realise that they’re different and not necessarily in a good way. If you are concerned about how your child might feel after being diagnosed I want you to weigh up the implications of how they might feel if they are not diagnosed. Whether diagnosed or not they will still be different: nothing will change. Either way they will have an internal narrative, strengths and challenges. The questions are, what will their narrative be? Will they have the chance to fully understand and utilise their strengths? Will they overcome, or be overcome by, their challenges?
In not being told this key piece of information, these children will go through life knowing they are different but not knowing why. Having you supporting them and advocating on their behalf as children may get them through childhood unscathed however what happens when they reach adulthood? Without knowing why they will not know what help and support to seek, or sometimes even that they need help and support. Listen to the voices of those who were diagnosed as adults who, as far as I am aware, are all saying with one accord: ‘I knew that I was different but I didn’t know why. If only I was told I was autistic when I was a child! If only I knew, my life could have been different’.
But … what will others say?
This is a hard one because you’re absolutely right, the world is not the most friendly place towards autism and some people are downright hostile. Schools and the majority of workplaces are not set up for differences – within those walls it’s all about conformity. Family and friends all have their own opinions and experiences and may even cut you off if they disagree with how you’re raising your children. Ignorance about autism is rampant, judgement is rife. It seems to be that difference is always shunned unless of course Satan is involved and then it tends to be celebrated (the transgender movement is a key example). Will you be judged if your child is diagnosed as autistic? Possibly. The question is, will you be judged anyway? Parenting an autistic child can be extremely challenging and perhaps having insight into your circumstance and a reason why might make all the difference in their perception. This will then (hopefully) translate into understanding and individualised care of your child. Or perhaps not? Some people, even your loved ones, will never accept the reality of autism. You now have a choice: avoid them or learn to live within their worldview, either trying to educate them or keeping your mouth shut. The answer is not always simple and I am not to decide what is best for your situation. Of course, there is also a third option: just don’t tell them about the diagnosis in the first place. It is yours to share or yours to withhold, after all. Regardless, you and your child will be judged, so what do you wish to be judged on? You also must ask yourself, is telling my child that they are autistic about what others think, or is it about my child’s welfare? Who or what are you concerned most with?
But … I don’t want my child to be autistic!
I totally get this one. Autism isn’t necessarily the easiest thing for a child or their family to live with. It comes with strengths, but it also comes with a lot of challenges. You are allowed to grieve what is lost or what may have been. You are even allowed to be concerned for your child’s future, as every good parent would be. You do not need to love the diagnosis however life will be easier if you accept it. The thing is, and I say this with compassion, you actually don’t have a choice. It is what it is and ignoring it isn’t going to make their autism go away. Your child is autistic whether you like it or not.
I am wondering though if there is something else hiding behind your struggle. Do you feel guilty in some way? Perhaps that you missed something when they were younger, or that you might be the cause of their disability? Or do you have difficult memories of someone from your youth (perhaps even yourself?) who was labelled as ‘different’ and are afraid that history will repeat itself with your child? If you do need to work through trauma or guilt or shame then please seek help, for your own sake as well as the sake of your child. Your opinion of autism is guaranteed to influence your child’s opinion, so try to make peace with the diagnosis and present it to them as honestly and as positively as you can. Meanwhile, find out as much as you can about it (such as checking out my other blog posts) as this will help you answer those other questions, such as the possibility of whether you missed something or what causes it.
But … my child isn’t disabled.
Yes, yes, they are. Perhaps not in the way you would traditionally conceive disability to look, but they are definitely disabled. Autism is a hidden disability and it is just as disabling as being in a wheelchair or having Down syndrome. In some ways it can be even worse because ignorance concerning autism, as well as expectations of your child based on their physical attributes may far outstrip their capacity. I want you to reframe your idea of disability. If the entire world was organised for wheelchair users then those in wheelchairs would no longer be considered disabled and those without a wheelchair might now fit into that category (ceilings would be lower so they’d bump their heads, they couldn’t play wheelchair sports, etc.). It’s about living in a world that does not cater for your physical impairment or, in the case of autism, neurology. Your child is living in a world that fails to cater for neurodivergents because neurodivergents are not the majority. It is your responsibility to initiate any support that they may need, and to teach them to be as independent as possible, as one day they will hopefully be in the position to navigate this world without you holding their hand. If your child does not know they are autistic then they cannot advocate for themselves and their disability.
But … they’ll just use it as an excuse.
I’d like to say no but the honest answer is that yes, some will. Unfortunate but true. The autistic person can easily have the opinion that they are not in control of their actions; they cannot help but fulfil their natural tendencies. Does this sound familiar to you? I’m pretty sure I read this somewhere… Oh yes, it was in the Bible and that’s called SIN. All of us are sinful and we all want to blame something else or someone else and not take responsibility for our own actions. Autistic people are no different, they just have something else to blame! Autism has some very strong compulsions that are difficult to overcome and not all of these are sinful. Those that do result in sin can be extremely hard to fight if they are not given the supports and tools to fight them. While it is difficult to prevent an adult using their autism as an excuse, a child can still be trained and you are in a position to train them. You are a key player in whether they use their autism ‘for good, or for evil’..
If you wish to keep reading other reasons why parents may not wish to tell their child they are autistic, or perhaps are yet to have your own concern addressed, check out Part 3.2: But…continued.