A lesson in love from Down syndrome, a lesson in emotional distance regarding ASD

Two special needs stories, related, but at such opposite ends of the spectrum of acceptance that it’s hard to think they were published within days of each other, one in The Irish Examiner and the other in The Irish Times.

Regarding the first. Some of my friends with kids diagnosed with autism are furious these days and nights over a particularly thoughtless and unlovely piece of writing in the Irish Examiner by a man called Tony Humphreys. I don’t blame them. It casts them as cold parents, whose emotional response to their kids’ difficulties actually makes everything worse. I won’t add to the debate, especially since so many of these people, who I know, admire and very much consider friends, have done a sterling job in throwing cold water on  his article, and questioning the stance of The Irish Examiner in publishing it.

You can find Sharon’s take here.

This is Lisa’s take on it.

Bock.

Siobhan O’Neill guest blogs about it on Suzy’s Maman Poulet.

There’s a ton more too, and it demonstrates just how important it is that if you have a reputation and a following, as Tony Humphreys does, it behoves you to have your information clinically accurate or else you will at the very least offend people.

And then there’s this, from today’s Irish Times, written by another Tony.

Tony Bates is founding director of Headstrong, The National Centre for Youth Mental Health. It couldn’t get much further from the coldness of that Humphreys analysis of where autie parents are going wrong. I’m not going to edit it, because I think it’s worth reading the entire piece. It gets a little sentimental (Scratch that, it gets a whole LOT sentimental!) but go with it. Because as the young man said, “Ah love. It’s what bonds us all.”

I think Mr Humphreys here probably knows that, and I hope he can recalibrate the part of his thinking that fails to recognise that most parents of kids with ASD do too.

A CURIOUS thing happened to me on the Luas recently. I had been standing since boarding the tram at Heuston, but when we reached the Jervis Street stop, a seat freed up. I sat down, grateful for the rest. I was happily window gazing, when I heard a loud voice from somewhere behind me asking for “a two euro piece”. I noticed a look of disgust on the face of a woman in a nearby seat, so I turned to see what was up.

A young man with Down syndrome was making his way through the packed carriage. His beautiful open face looked distressed. He persisted in asking everyone around him for two euro, mumbling that he needed it for the bus home. I dug a coin from my coat pocket, reached back and handed it to him. Job done; back to gazing out the window.

A moment or two later, this same young man sat down in the seat beside me and put his head in his hands. Apropos of nothing at all, he blurted: “How do you stop feelin’ annoyed with someone?” This guy clearly preferred to skip small talk.

I asked him what had him so annoyed, but he wasn’t happy to talk about it. “Just someone who did something a month ago that made me mad.” And then he repeated his question to me with an even greater sense of urgency: “How do you stop feeling mad at someone?”

I asked him what it’s like to walk around holding onto anger. He remained bent over, head in hands, distressed by a feeling that wouldn’t leave. And he said: “It hurts.”

We had an audience who were monitoring our conversation with interest. Maybe this boy wasn’t alone in walking around with unresolved anger. Maybe these onlookers were asking themselves the same question: “How do I let go of my anger?”

I wasn’t sure at all what to say to this young man, but he was growing on me by the minute. I offered him a lame cliché – “Maybe you need to forgive him” – but he saw through this immediately. “No,” he said. “Tried that, didn’t work.” That put me in my place.

I remembered something about people with Down syndrome: they are more connected to their heart than most of us. So I took a different tack and suggested: “Maybe you need to love him.” For the first time since he had sat down he lifted his head from his hands, sat up, and smiled. “Ah love,” he proclaimed loudly. “It’s what bonds us all.” And he threw his arms out in front of him.

He introduced himself to me and shook my hand. The woman who had been turning her eyes to heaven only moments before, leaned over and kindly offered him her best advice: “You need to pray for him too.” Another woman sitting behind her added: “You know, no matter how bad things might be for you, there is always someone else who feels even worse.”

The thought briefly crossed my mind that this second woman – whose face revealed her to be no stranger to pain – had probably tried to console herself with this truth many times.

My new friend responded warmly to each of them, thanked them and shook their hands. The tense atmosphere that had hung in the air vanished. There we now were, all of us, no longer strangers, crowded together at the door waiting to disembark, joking about keeping our balance as the tram curved around Busáras.

In the space of four Luas stops, something had shifted for each of us. We had been wary strangers at Jervis, but smiling friends when we reached Connolly. What had made the difference? Was it the inspired advice that we had given this young man? I suspect not.

I think it was more what he had done for us. His lack of pretence, his direct openness, had disarmed us. He had allowed us for a moment to step out from behind our separate selves and experience a simple but powerful connection with one another.

It occurred to me that this young man with his so-called disability, who made a carriage cringe, was freer and probably healthier than most of us that day. While we lived mostly in our heads, our hearts hidden behind a fear of disapproval, this young man lived from his heart. And even when it hurt, he didn’t try to hide it.

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13 comments on “A lesson in love from Down syndrome, a lesson in emotional distance regarding ASD

  1. Elbog says:

    I know, from my experience, that we all live on a spectrum. As to the first article, he might be right, a small percentage of the time. That does not explain the overwhelming majority.
    As to the latter, it’s easy, ’cause I live with such a person, although I’m sure that not all Down Syndrome people are like this. They’re people like the rest of us. Oh, that we could all live more from the heart; I know I’m forced to when Emma’s around.
    Thanks, Nick.

    • Nick McGivney says:

      I hear you Elbog, and I’m not about to fall into the trap of sentimentality that’s peeping out from the second story, well, not completely fall into it anyway. I did enjoy the way it presented a new viewpoint to old eyes, sentimentality or no. Of course, it coulda been an elaborate scam to score €2. I think he’s shortchanging his schtick though if so…

      • Elbog says:

        Well, one other thing to consider (and I’m always considering, lol). Correlation does not mean causality – moreso with your first example rather than the last. . . I kinda meant that, but didn’t say it directly.
        Love the new pic at the top, by the way.

  2. Lisadom says:

    Mma Silvia Potokwane, matron of the orphanage in “The No 1 Ladies Detective Agency” has a motto with regard to anyone but particular difficult children: “Bring Extra Love”
    Miriam O’Callaghan says that 99.99 % of people are basically decent and the .1% that aren’t – have probably been hurt in some way so they need extra consideration. I try to remember this when someone is behaving badly. It is easy when it’s my son – extra love that is. Much harder when it’s someone like Humphries.
    xx

    • Nick McGivney says:

      As I said in the article, Mr Humphreys comes with the following and the reputation. The onus is on him to have the facts with him too. Disappointed with his follow-up piece. A sense of entrenched thinking.

  3. Suzanne says:

    I forwarded this to a friend + i’ll pinch her response as it puts it quite succinctly…
    “I hope that autism guy drops into obscurity and is never published again. I did particularly enjoy the Bock response.
    The second story is lovely and it would be nice if this kind of awareness about the joy that difference brings to the world could be raised to the point that it’s not ‘news’.”
    Not necessarily relevant but she has 2 ‘normal’ kids going to primary school with a special unit for autistic kids so they are growing up accepting + understanding differences – seems like an excellent idea to me.
    The Irish Examiner should hang its head in shame, not just for publishing the article in the first place but also for the completely spineless response to the torrent of mail it received.
    Keep up the great blog.
    Sending you sunshine from Australia. :)

    • Nick McGivney says:

      Thanks Suzanne, and apologies for the late response. Yes, the Examiner (which does many fine things) had a bit of a cop-on malfunction with how they treated this one, aside even from publishing it in the first place. Humphreys still insists on pushing the gist of it too, but he’s obviously got his own undiagnosed stupidity issue on this particular one. As I write it’s a particularly fine Saturday afternoon, so thanks for the sunshine. :)

  4. Jean Carroll says:

    Thought I’d already commented on this Nick, but it was lovely to read it again.
    A lady recently told me that Finian (my little man who has asd) will open many hearts. He has already made me, my husband and his brother and sister better people so he’s off to a flying start.
    I still can’t get my head around Humphries…even now, 3 weeks later I’m still in shock that a supposed professional can believe this.
    Beautiful blog post XXX

    • Nick McGivney says:

      Thanks Jean. Humphreys I think now finds himself painted into a corner of his own fabrication, and he’s damned if he’s going to apologise or admit to being more wrong than right on this – or possibly any – issue. If only we could get our hands on the long form of his birth cert. We could forgive a lot if we discovered that he was in actual fact born on Neptune or Pluto.
      :)

  5. KimL.(aka Joshua's mom) says:

    I believe that Mr.Humphreys needs a hug…..:) I loved the piece by Mr.Bates, though. Thanks for sharing. Hope that you & your family are well.

    • Nick McGivney says:

      Thanks Kim, and apologies for not replying until now. Sign of how little I’ve been keeping up with the blog…

  6. Mel says:

    Wow, just wow.

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