Thread by @suzannezeedyk

THREAD.
- On how the media reports research studies of autism.
- On how that triggers people exhausted by underfunded SEN services.
- On why curiosity is valuable.
- On HOPE.
- Prompted by Twitter's response to various media reports on this new study:
bbc.co.uk/news/health-58…

2. Okay, so...A study frm Aus has made headlines today. It is small,but hopeful. It shows that if parents are given help in interpretng their baby's behaviour whn it is confusng, they relax &feel more confident. Age 3, things are better than w/o that help. jamanetwork.com/journals/jamap…

3. This is ordinary, right? *All parents deserve help.* Especlly if you are confused &tense about yr baby's behaviour. This wd help all parents, right? In this study, they chose to focus on babies showing communicative precursors common in autism, often not diagnosed til age 3.

4. Our society doesn't offer that help to parents of babies. We leave way too many families to cope on their own, nowhere to turn. Lots of parents of childrn who 'turn out to be autistic' (meaning they get a diagnosis around abt 3yrs) hv felt something ws 'wrong' for a long time.

5. So this study offers hope. It is tiny, only 104 families. But it shows that if you offer help (what they called an 'intervention') between t ages of 12 & 18 mos (that's a mere 6 months), you can reduce the severity of autism symptoms. For ex: Age 3, more language.

6. I presume t Australian univ or t scientific journal put out a press release abt this study. That's how the media picks things up, although most press releases don't get attn. Somehow this one did & then it rippled across various newspapers. *Very* different headlines resulted.

7. BBC headline: "Early baby therapy cd reduce autism diagnoses". Their story quoted:"creatng an environmnt that works for autistic people". YES! YEAH! Also worries that: ppl might think autism shd be 'cured', although that's not what t resrchrs suggstd. bbc.co.uk/news/health-58…

8. @guardian headline: "Autism therapy aimed at infants may reduce likelihood of later diagnosis".
Quote: "We think ths a landmark finding because it suggsts early interventn can hv a substantial effect. It may change t way services provide support." YEAH! theguardian.com/society/2021/s…

9. Thn there's t @Telegraph headline. It's sh*t. Its not what t researchrs said at all, but it served t newspaper's own aims because it managed to trigger lots of ppl on Twitter. "Autism can be prevented by teachng parents now to interact w/ their babies." telegraph.co.uk/news/2021/09/2…

10. Here are examples of how ths badly-told story is playng out on Twitter. Rembr, t resrchrs publishd a small study that offers hope to parents who struggle if they feel confused or overwhlmed by their baby's behaviour. Newspprs don't nurture curiosity.

https://twitter.com/johnharris1969/status/1440208524621979648?s=20

11. Some parents are being triggered. Some feel blamed. The news stories seem to blame thm for 'causing' autism. *Note: Parentng does not cause autism.* The rsrchrs never said that. But because our society *blames* parents for *so* many things, we become closed off to curiosity.

12. All children are shaped by relationships they experience. All children are shaped by parents' ability to be responsive. All children are shaped by sensory experience of their environment. Children (eventually) diagnosed as 'autistic' are no different than other children.

13. Our systems & society easily miss this. Its too easy to end up seeing labels and not human beings. Its easy to forget about or not know about developmental histories. Its too easy to ignore the sensory/stress capacities of *each individual*. We so easily skip over curiosity.

14. In my work, I end up talkng abt a wide range of expernces: visual impairmnt, dementia, autism, trauma, deaf blindness, NICU, etc. Here's one book that brings those togethr. People are surprised by t breadth. But underlyng them all is human connection. hachette.co.uk/titles/suzanne…

15. I'm far frm t only one trying to figure out how to help our society understand how much t early interactions between babies & parents (& childcare staff) shape our neurology &biology. For ex, here's @childinmind talkng about that too re: the pandemic.

https://twitter.com/childinmind/status/1415685857214935040?s=20She's

16. Here's @BDPerry talking about how much the first few months of life shape all humans biologically. People are surprised such early experiences could be so long lasting. That's why I believe we need to talk about these processes.

17. Is it worth me taking the time to craft a long thread on this subject? I don't know. I've been willing to give it a shot. I'm sad & frustrated that the media coverage around this autism study has been so un-helpful. It hasn't helped prompt curiosity about how humans develop.

18. I've taken a risk in commenting on this subject on Twitter at all. People hv strong feelings & views on autism & ADHD. It is easy to be misread on Twitter. But I decided to risk it anyway so that there was an alternative view available about the insights of this study.

19. The help the researchers offered in ths study is what every parent deserves: help in making sense of & responding communicatively to their baby. The terms 'intervention' & 'therapy' make it sound like somethng has to be 'fixed'. Its misleading & unhelpful. I wish they hadn't.

20. The help (the 'intervention') used in t study is very close to that described in this book, publishd 2011: Video Interaction Guidance. My review is on t back. I said it was "a book of hope, a way out of relationship patterns that have become jagged". amazon.co.uk/Video-Interact…

21. So all I'm really saying is that this story & study has been framed as about autism. I get it. That's what they measured. I'm just trying to say that's limited. It is abt all of us, as human beings, as childrn shaped by our environment &the nuanced relationshps we experience.

22. I hope this thread is in some way helpful. I am thinking of all the autistic children punished for their 'behaviour' because the education system & exhausted teachers can't get curious about their sensory capacities & developmental history.

23. I hope ths tread is in some way helpful. I am thinkng of all t parents who deserve to hv support in their interactions w/ babies, but our society & systems don't offer that - not even in a stressed time like this pandemic. The professionals already in t system are exhausted.

24/end. I hope this thread in in some way helpful. Maybe some journalist-feature writer will contact me and say "Can you explain what you mean?" I'll answer: Human beings are born wired for connection. We're all shaped by it. That's what this study on autism tells us.

12a. And because Twitter's limits often cause confusion, let me clarify: I mean 'children diagnosed as autistic are no different *in these processes*'. Yes, they may have neurology that diverges from other ppl, but their development is still shaped by environmnt & relatnshps.

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