I have been asked a few times to “intervene” with other families that are raising autistic children. People see how far my son has come, and how well we appear to manage his difficult behaviours, so they think I’d be the perfect tool to set another autism family straight. Specifically, to tell this other family that they’re not doing enough or should be doing something different.
They expect me to reach conclusions about how well this family is doing, and what they need to change, based on their second-hand observations and sometimes my own observations (“come to this party and tell me what you think…”).
These requests don’t typically come from the autism family itself; they come from some well-meaning friend of the family or distant relative; someone who doesn’t actually live with autism. If a family with an autistic child wanted my support or advice, I’d be cautious about saying yes but I’d be willing to help if I could (keeping in mind that autism types, severity and causes differ so much that my experiences and applicable knowledge may well differ significantly from what they need). But I will not step in without a direct invite from the family itself, even if I can see something that I’d do differently. And there are some very good reasons for my inaction in those situations. I’m going to just give you four of those reasons.
First off, the family will probably already have a team of experts working with them. They will be regularly interacting with that team too; it’s not like you see a speech therapist or occupational therapist once then never follow-up. Those experts and that family know best what is working and not working with that individual child. To form a meaningful opinion I’d have to get a full history of what they’ve tried and who they’ve seen, and I have no right to ask them such information unless they offer it up. Neither will having that information make me skilled and knowledgeable enough to fix the problems; the only thing I’m an expert in is my own son, and even there I have a heck of a lot left to learn.
Secondly, with an autistic child, it is generally not recommended that you work on every issue at the same time, otherwise you can overload the child and drive them into withdrawal and negative coping behaviours. So when you observe a family dealing with an autistic child and see issues 1, 2 and 3 not being worked on, you’re not noticing their constant (and often exhausting) efforts to combat issues 4, 5 and 6 right in front of you. I know my own extended family has often remarked on how well-behaved my son is and how I’m not having to do much anymore to keep him that way. I am always amazed that they haven’t noticed any of my constant verbal and physical efforts to avoid and manage the meltdowns and anxieties, right there as they watch; I’m glad I make it look effortless, but it’s not, it’s exhausting.
Thirdly, the exact situation you see – maybe a party, or a visit – even if you’ve seen it many times before, is just that; situational. In some situations you might have to make allowances you wouldn’t under other circumstances, such as giving your child more freedom to stim because they otherwise get too worked up or they’ve had a very long day already. Or perhaps the family thinks they’re around friends so they don’t have to constantly monitor every tiny aspect of their child’s communication and behaviour, just for a while; thinking those around them understand. Not realising those friends have recruited strangers like me to judge them from the sidelines.
Fourthly and finally, it’s very difficult to form any meaningful judgment without knowing how far the child has come. You may see a family allowing an autistic child to wear nappies at age 8, but what you might actually be looking at is a family that fought for years to stop their child smearing faeces on everything and have finally conquered that issue; the nappy is just the next step in that on-going challenge. Or you might see a child who hits his head with his hand a few times each half hour, but not realise that used to be walls he hit his head against until it bled. You see a problem, which might actually represent a success story from the parents’ point of view.
It’s like approaching someone who has just run a marathon, noticing that they’re all red in the face and bent over, and suggesting that they go for a run right there and then because the exercise would do them some good (since the bad posture and ragged appearance are evidence of lack of healthy habits). You need to know what you’re looking at, understand it, and know what’s gone prior, before you jump in to hand out unrequested advice.
So no, I’m not going to do an intervention for that family with an autistic child; presuming to tell them what they did wrong and what to do instead. Rather I’m going to offer them my support and understanding, and let them share if they want to. I will not be pulled into the very same judgmental words and actions that drove my own family into deeper isolation years ago. If you want to help our families, learn to listen and show compassion. Start by learning about autism and how much it varies, then learn as much as you can about the individual, what type of autism they have, what may have caused it (if known, it’s usually not), and how severe it is.
Dealing with autism is difficult. Dealing with other people’s ill-informed and judgmental attitudes about autism, is a challenge too. There are right ways and wrong ways to go about getting a family help; encouraging a stranger to watch and judge the family who don’t even know they’re under scrutiny, is a wrong way.