I’m sharing this post with my 19-year-old autistic son, Philip, who is looking for the experiences of other autistics who've been told they need to spend time with peers because it will ‘improve their social skills’.
My contributions are in italics, with Philip’s in plain text. First I’m providing an introduction to Philip’s experience.
Despite Philip telling our local authority (LA) both verbally and in writing several times that he would not be able to cope with, did not want, and would not go, to college, we unfortunately had to go to an SEN Tribunal to rule college out and to get a post-19 bespoke package of educational activities and learning in place for him. We have written about that here, but….spoiler alert……we won the case ☺
Part of the LA’s argument for a college placement, and against our bespoke package proposals, was that Philip needed to interact with his peers – that this would be ‘good for him’ and that it would ‘improve his social skills.’ Philip calls this ‘social integration therapy' or SIT for short. He was mightily offended by the LA’s presumption that they knew better than he himself did about what he needed, and was inspired by this experience to start campaigning against SIT.
Please help if you can by sharing this post with autistic peeps who might be interested in helping him to challenge the notion that spending time with peers improves the ‘social skills’ of and/or is ‘good for’ autistic folk. Over to Philip.
Philip Milburn’s ‘social integration therapy’ (SIT) study
I've found something in need of eradication. I hope you'll all take the time to read this and if you’re willing to share it, I hope I can count on you to assist me as I'd feel indebted to anyone who can support my new goal.
I assembled this after I decided that I did not want to passively allow SIT to continue in the UK. Allow me to recount why. It was on December 20th 2018 that I attended a Tribunal centered on my education. Since college is not an option due to how my condition impacts on me, my Mum and I created a bespoke provision in order to address the social communication difficulties stemming from my autism and provide me with some additional learning that I still need to do in preparation for getting a job.
Oldham council argued however that I could manage in a college or with a different version of the provision I required. One of the things they suggested was that if I engaged with a peer group I would then pick up and obtain their communication strengths. This is something I refer to as social integration therapy (SIT).
This “solution” appears to be something that has been suggested for many decades now - wake up, this the 21st century! Thankfully I was spared SIT on that occasion as we won the Tribunal, but I decided that enough was enough. I am taking it upon myself to seek out the experiences of people with a diagnosis of autism who have had the misfortune of being subject to this by their council, parents, or school.
I'm making it my job to explain how:
- SIT does not work and,
- how it is an abusive and cruel practice.
Point number one: SIT is ineffective/counter-effective
The first thing I want to make clear is that SIT is an unreliable program and in many cases backfires and worsens whatever issues it is commissioned to assist with. Speaking from personal experience, I recall that I was extremely upset when one of the schools I attended closed down and I lost touch with my friends there. This caused severe unhappiness as I was not equipped to deal with that at age 10.
My parents (before they knew better) tried to help with this by having me attend various groups/clubs for a while, including a chess club, an autistic youth group (just saying that makes me feel sick), and a handful of other activities with peers.
When I attended peer groups it did not improve any social difficulties at all. In fact I left each time with a bad taste in my mouth until I lost all interest in maintaining friendships as they began to appear to be more trouble than they were worth. My social competences didn’t improve from me being around people my age - they were unchanged because all we did was fall out, argue and regret ever meeting each other. This made things worse for me, not better. I felt like a failure who was never going to have any friends.
The fact is that you only engage well with your peers if you have social competencies, but the SIT theory is you get social competences from engaging with peers. Social competencies lead to peer interaction but you cannot reverse engineer this principle. Peer interaction does not lead social competence, that’s like saying you can make fire into wood or cooked meat into raw.
Point number two: SIT is abusive and cruel
One point I’m keen to raise is that if someone with autism finds it difficult to work in a 1-1 with someone, then there is no chance they will get on in a group. This should serve as another reason not to use SIT.
Many times that SIT is recommended come after someone has failed to engage in a 1-1 environment, which seems illogical and clumsy, especially after it has been shown that this lower intensity “solution” won’t work. Being put with peers when you don’t have the ability to enjoy relationships or even cope with other people – it’s cruel. If someone was unable to carry a 30-pound crate up some stairs would you ask them to carry a 40 pound create instead? Would it be fair and ethical to do that?
As I’ve said before, SIT is popular because it’s an attractive idea that a potentially devastating condition can be helped by doing next to nothing (putting a person with autism with peers) and not offering any special provision. This reminds me of angels and pandering romance novels, which I hate, because they paint an unrealistic vision of what to expect from yourself and others.
It’s easy, but foolish, to believe in SIT and anyone who does will regret it when it fails them or their children. The idea reminds me of old Wild West snake oil salesmen who promise that their miracle cure-all will help you when instead it can cause horrific suffering. Also SIT is a very cheap solution as ‘provision’ for local authorities and the health service!
Philip shares how his experience with RDI helped him
What has helped me to get on with other people is doing RDI with my parents and with some of the staff from Bright Futures School – the school that my parents set up for me so that they could build RDI into the learning.
RDI stands for Relationship Development Intervention and my Mum explains that: RDI is where the adult gets trained by a specially qualified RDI Consultant to change their communication and interaction style in a special way that helps the young person to master developmental milestones that they missed when autism got in the way.
RDI has helped me to understand other peoples’ non-verbal communication (facial expression, prosody and gesture) in a way that helps me to better understand what they mean e.g. sometimes people mean the opposite of the words they are saying…but it’s hard to decode that unless you also understand what their face and tone of voice is telling you. Because I have learned to do that in a very natural way over many years (doing fun stuff with my parents like baking, playing games), I don’t have to think about it – it comes automatically so it’s not a struggle for me.
I also feel that RDI has helped me to see other peoples’ points of view better and to use the thinking of people that I trust (like my Mum and school staff) to decide what to do when I feel uncertain about something, as well as helping me to pay more attention to what other people are thinking and feeling generally. Those things seem to me to be crucial ‘social skills’ that are needed in getting on with other people.
Before they found RDI, my Mum and Dad were told by autism ‘experts’ that it would be good for me to mix with my peers and that it would help to improve my ‘social skills’ – hence the chess club and autistic youth group. But of course because I didn’t at that time have the social competence to successfully make friends, I feel that those experiences actually damaged me, robbing me blind of whatever friendships I might have had, given support from people trained in RDI rather than no support and being plonked into abusive toxic unlovable SIT.
SIT is a reckless policy that begs for trouble and draws countless unwanted blights upon those who have to suffer it. My own personal story was rather bleak but why stop there when I can gather more stories?
I’ve decided to inquire wherever I can to see what else I can drag up to chastise SIT and its supporters with and I’ve already been greeted by many upsetting, disturbing and distressing stories from others with such misfortune. I am going to use this information to campaign for SIT to be stopped.
Professionals collude with misinformation
It is hugely troubling that myths about SIT persist to this day and are perpetuated by professional people who are supposed to be helping autistic people (and are paid lots of money for their ‘expertise’!). My Mum shares this example from an Educational Psychologist’s report about a child:
Recently an Educational Psychologist wrote this recommendation for a severely autistic, minimally verbal 9 year old:
R needs to spend time with typically developing peers because 'R will have more opportunities to demonstrate latent skills and the social environment will facilitate this.’ A child who struggles to take turns with even the most emotionally attuned adult will be able to magically develop 'social skills' from being in a group of 30 typical peers.
From a developmental perspective, that just doesn't make sense. There is also no research to support it that I am aware of, yet it is something that I have often seen foisted upon our children and young people in EHC plans, social care plans and any other plan you care to name that is supposed to be supporting them. It is a myth that well and truly needs busting and I am so glad that Philip has made it his goal to be instrumental in busting it (dunno where he gets that from...?)
Philip calls for experiences of other autistic people who have gone through ‘SIT’
Anyone who is reading this and has a personal story they’d be willing to tell, or who knows someone who has, I invite you to share it with me and assist in making clear that SIT doesn’t work. I’d be thrilled with anyone who had the courage to help me and others who want SIT gone.
Please contact me with your story by sending an email to: [email protected] Please share, if not for me, then for others who don't deserve this.