There are a lot of counterintuitive claims that you’ll encounter in the autism community. Claims that will throw you and think the people making the claims are in denial, running some sort of hidden agenda, lacking perspective, or all of the above. For example, the claim that autism is simply “difference” rather than disability (or that it is actually a gift), or that the causes of disability are societal rather than medical, or that every autistic child can and should be mainstreamed. The one I’m going to deal with today, also falls in this counterintuitive category: The claim that is is harder to raise a child who is mildly affected by autism compared to a child severely affected by autism. As a mother who has two children on the spectrum – one who was once severely impacted by autism and in a special school, and one who was so mildly impacted that I used to be very sure he wasn’t autistic – I’ve had some relevant experience here, that I want to share.
What I want to say though goes beyond a simply personal view; I want to share how this question ties into the broader concept of happiness.
Raising both my sons has been hard, but for rather different reasons. Why might someone claim it is harder to raise the mildly autistic child? I’ve seen people point out before the obvious starting point here: It is easier to access supports and understanding from school and governments (and even strangers), when your child’s issues are more severe. But the impact of that simple truth is much larger than I ever appreciated; for example, I spend weeks working on applications and forms that are highly unlikely to result in any assistance, and lack of supports from agencies and professionals mean I have to do all their roles myself so I can’t get a job and I’m forever exhausted. This is arguably too simplistic though – the work-load is huge even when you do have heaps of therapists and agencies on board for a more severely affected child, and the paperwork is endless even once you’re in the system (though much less maddening since you get told “yes” more often than “no”).
Another explanation you’ll often come across is about the mental anguish experienced by those more mildly affected by autism; the hardship all-round in raising a child who is depressed because they are so keenly aware of their differences from their peers, in a way that a more severely affected child may be oblivious to. However, this again is somewhat too simplistic; I have seen the mental anguish and suffering of those who are more severely autistic too – frustration from inability to clearly communicate even basic needs with those around you, and to seek comfort for themselves when overwhelmed (for example). These may seem to be of a different quality of mental anguish than suicidal tendencies born of heightened awareness of your own social differences, but it’s still misery and despair in the face of helplessness. I would not venture to claim one of those forms of despair is more essential or painful than the other (and don’t get me started on the death rates – dying by your own hand or dying by another’s, the first more likely to happen if you’re more mildly affected and the second if you are severely affected – are both horrendous deaths; both tragic and avoidable, so let’s not play the “which death is worse” game, at least not today.)
For all that though, I feel that the real key to whether it is harder to raise a severely or mildly affected autistic child, lies in other factors that are so different person to person, as to make the entire line of enquiry rather pointless. Those other factors are to do – simplistically at least – with the happiness and personality of the carer themself.
The first factor here, is what the carer went in with to the parenting role: How resilient is their personality, do they suffer from their own mental health issues; how well supported are they – do they have many friends, do family live near by; does their culture and religion accept or discriminate against the disabled; are they wealthy, etc. If considerations like this are in your favour, then no matter how severely your child may be impacted by autism, you may be thriving where someone with a very mildly affected child is crashing and burning. With so many diverse and important personal factors at play, you need a “control” – for example, someone like me (and many of you of course) who is one person with all the same personal factors at play, but with children at different ends of the spectrum. Ask us which we find easier – you’ll get a much more useful response that asking person X from a different culture, background, mental health, etc, whether they found it hard to raise their differently-impacted autistic child than person Y on the other side of the world with their different… everythings.
However, I think there is one more crucial piece of the puzzle here, for which type of child is more difficult to raise. This final piece ties in to a certain extent with the personal factors I discussed above, but it also a consideration in its own right that I think sheds light on this entire question. It is the issue of happiness, and what makes us happy. A recent study I was reading about on the question of happiness, empathised the importance of expectations, in two key ways: (1) having hope and expecting good things makes us happier, and (2) having our expectations crushed make us less happy. You immediately see the conundrum – if you have high hopes you may be a happier person, but the higher the hopes the further you fall when they can’t be met. So being upbeat but also realistic seems quite important here.
When it comes then to raising an autistic child, you can see why all this would be really very vital to the experience of raising that child; this is where I think it may be helpful for me to draw on my own experience to make the point I am driving at here.
When my first child was diagnosed with autism – the more severely affected child at the time – I was utterly devastated. I went into a very black hole, I was deeply depressed. My expectations for my son to have a good life – the life I had dreamed of for him – seemed to have been ripped away. I felt incredibly hopeless – busted expectations, no hope, equals utter misery, and an extremely difficult time raising my son on top of all the objective challenges. I adjusted; I came to understand autism, I found hope, and in turn I coped better with my huge workload of dealing with my son. He was incredibly hard work, but I was doing OK.
On to my second son – the mildly affected one. Here, again, I faced a huge depression around coming to terms with the challenges he was facing every single day at school, where his autism and other conditions had become so clear. But the reasons for the depression were not fundamentally the same as before. The problem was again tied to hope and expectation, but not just hope and expectation for my child this time. I had found hope for myself as his first day of school had drawn near. I thought I would finally – after nine years of full-time care for his brother and then him – have the chance to be me again. To get a job, to reconnect with friends, to maybe even have a clean and tidy house because I’d be free enough to have the time for that too. Such simple things, I really thought they could all be mine. Hopes that were soundly ripped away as I realised the school(s) couldn’t cope with him, and that I was unable to access adequate supports to let him have a proper full-time school life. No job for me, no friends, no freedom, not even enough time to keep the house clean. Expectations crushed, hope gone, utter misery again.
It takes time to adjust your expectations, to change your hopes to be more realistic. It takes time to find out how to be happy again. Some autism narratives call this time a period of “grieving” for what you’ve lost. I used to think of it in that way too, but now I think it is more accurate (and less confrontational) to call it a period of adjustment. Adjust your hopes, adjust your expectations – once those are back in order and you’ve got your head around your child’s and your own life again, you’ll find some happiness again, and even the toughest challenges will be that much easier to face and work through.
The point is this: How hard it is to raise an autistic child isn’t ever as simple as counting off the challenges and their objective impact on you and the child you love (and it’s not simple to compare and rate such challenges regardless). It’s to do with the parent and the world they personally live in too – their personality, their history, their supports, their wealth, their culture, their expectations, their hope. Their happiness. Our children are individuals and are incredibly hard to compare, just as we parents are also individuals and are incredibly hard to compare.
So is it more difficult to raise a severely or more mildly affected child with autism? Yes, yes it is.