Why I won’t do that autism family intervention

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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.

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8 Responses to Why I won’t do that autism family intervention

  1. Rob Hosking says:

    “Dealing with autism is difficult. Dealing with other people’s ill-informed and judgmental attitudes about autism, is a challenge too.”

    AMEN!

  2. You know what I liked the best? When my son was first diagnosed, I was hooked up with a parent who had an older child. When I thought I was going to lose it, or I became overwhelmed, I called her, and she told me what she had done. She was there when I needed her. It was cool. The next parent to parent situation expected me to make 3 calls w/in a month and document it. I was on the other side. It was uncomfortable for both of us. What was I supposed to say?

    Having a parent you can call when you feel at the end of your rope (I called her 3 times in a 2 year timeframe, but I knew she would be there): priceless. Being forced to form a meaningless relationship on company time…piece o’crap. Never worked for either of us.

    • Interesting experiences usethebrain, raises some interesting further questions too about how best to support families, and how efforts to support them can sometimes do the reverse or backfire in other ways.

      I think versatility is important; each family might need different types of support provided in different ways. Any group or person offering such support needs to respond to the actual people and situation they’re dealing with, rather than use a one-size-fits-all approach. I think another important consideration is what stage is the family at; if they’ve had the diagnosis for many years it’s highly unlikely they need an intervention (which is the principal situation I had in mind as I wrote my post). But a family very early on in the piece might need more guidance, but again, that guidance needs to be a push in the direction of experts, plus understanding and compassion, rather than judgments drawn from “covert” observations.

      Lots to think about anyway. Thanks for your comment.

  3. I think you’re wise coming to that conclusion. There’s nothing more confidence-destroying and crushing than some smug parent of another child with autism who knows nothing about your child with autism, telling you what you’re doing wrong!! I do agree that having someone to listen to you and understand and give words of encouragement is priceless. It’s a pretty lonely place, being on the receiving end of autism and having someone to bounce ideas off (without being told you’re not doing enough) is gold dust! xx

    • Well said Kristina.

      It’s so important to be mindful of the message we give each other when we’re trying to help; unfortunately “best intentions” doesn’t always deliver best results (“the road paved to hell..” and all that).

      In my experience, a parent of a child with autism will reach out for advice about their child’s symptoms with very little or no encouragement, if they genuinely need that help at the time. But they’re less likely to reach out for the emotional support they also need because they get so drawn into the exhaustion (and often isolation) of caring for a difficult child. So it makes sense to offer up the understanding and caring first and foremost, and let the rest of the advice flow only if requested or if it comes up naturally.

      Of course there are extreme situations where we might want to intervene cause we’re worried about maybe the child’s or parent’s safety, but at that extreme point it’s usually a situation for experts and there’s probably very little one parent can do to actually “fix” the situation. (Assuming they’ve even read the situation correctly at all; there are plenty of horror stories of police wrongly intervening with an autism family in ways that make things a lot worse.) At that level of need comes the far trickier questions of whether what you’re seeing is “child abuse” or neglect. That’s a rather separate discussion I think, and extraordinarily rare compared to the everyday situation of a parent trying to do their best with an autistic child. I seem to have gone off on a tangent there so I’ll stop my ramble! I might feed those thoughts into a proper post in its own-right later on.

      Thanks for your thought-provoking comment!

  4. Aspergirl Maybe says:

    Sounds like a good policy to follow! Perhaps the person asking you to intervene could use some guidance on how to offer their help to provide a bit of respite or a supportive listening ear to their friend or family member!!

  5. Vanessa Kaye says:

    Great Article – I love it!

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