Interview with Emily Swiatek

Emily Swiatek, an Autistic Woman who was one of the stars of the Channel 4 Documentary ‘Are You Autistic?’ , has kindly given some of her time to be interviewed by Autistic UK, about the programme, and some of her experiences! Emily also works as an employment training consultant for the National Autistic Society.

 

If you haven’t yet seen ‘Are You Autistic?’, you can watch it here 

 

Ryan Hendry (Autistic UK); Firstly, thank you Emily for taking the time to answer our questions, I am sure you are very busy after the airing of last nights program!

This programme originally had a very different initial concept. But, with the involvement of Autistic People such as yourself, it seems as if there has been an entire change of thought, and the programme went in a completely different, and I have to say, much more positive direction. Would you be able to tell us, how did your involvement begin with the production, and how you felt you were able to help change the show’s production?

 

Emily Swiatek; I’ve been involved in the programme from the very early initial concept stages back in 2016, where I and a few other staff members from the National Autistic Society met with the team from Betty TV. I’ve worked on a few other TV shows, but this one felt different – fresher, more positive and from the start there was the desire to have a strong autistic voice and a lot of representation of autistic women.

TV shows often go through a number of different stages when they’re being made and the initial concept will look dramatically different to the end product -that was certainly the case for this show and it meant we ended up with something really great. I worked on the TV show predominantly in my own time, not work time, and gave as much feedback as I could on the things that I felt would help make the show a more positive experience for autistic people. I was disappointed when the initial launch of the show had the title that it originally did and I’m really glad that the production company and the channel listened to the feedback they received. Obviously, I was just one voice and I am so pleased that the Ambitious Youth Council also got involved and that their voices featured so strongly in the final show. I think it helped it become something even better than I’d dared imagine it could be right at the start.

 

Ryan; “Are You Autistic?” Also showcased Autistic Women, and very much put them in the centre of the stage for this show. With the old stereotypes of girls not being able to be Autistic, do you think this was an important step in breaking apart some of the old stereotypes and myths?

 

Emily; I think I this show is so important in breaking apart the old myths and stereotypes around autism. Obviously, there’s still a long way to go and a one hour show isn’t going to completely dismantled decades of built up ideas, but I think it’s a powerful step in the right direction. I can’t think of the last time that I saw so many autistic women so publicly celebrated and it’s a real credit to Betty TV that they listened and championed the idea that autistic women needed our profile raising in a major way. It’s really cool that the study showed this too -47,000 out of 87,000 potentially autistic responses were women.

One of the next steps will be making sure we move away from such a defined gender binary approach, as I think it’s really important that we start to have conversations about the issues trans people experience in accessing diagnosis. And although this wasn’t a totally white line up, I think it’s important to acknowledge that it was predominantly white and that we’ve still got a long way to go with making sure autistic people of colour are also given public platforms to discuss the issues they face due to prejudice and stereotypes.

 

Ryan; Appearing on National Television must have been a big challenge. You, and the others, all did an exceptional job in presenting the show. But was there anything that had to be changed behind the scenes in terms of how the show was filmed/produced, in order to allow you and the others to be at your best?

 

Emily; I really love doing TV and don’t find it all that stressful – it’s quite similar to my day job! I actually provided training for the whole production team at Betty TV before the show started filming as I thought it was really important that any autistic people who were involved had our needs met as well as could be. The team were superb – no ask was too big and they did a lot to accommodate us from sending out photos of the team in advance to asking a busy London pub to turn off their music and coffee machines so we didn’t have a melt down. They were consistently open to feedback on how our needs could be met and what they could do better to make sure the process was as stress free as possible for us.

 

Ryan; For anyone who watched “Are You Autistic?” And feel that they may indeed think “hey, that all makes sense to me now!”, and wish to obtain a diagnosis, what advice would you give to them?

 

Emily; I think my first piece of advice for people who are thinking about obtaining a diagnosis would be to stop, breathe and take a moment. It can feel really confusing and overwhelming when you first start looking into autism. After that, I’d suggest doing some research and start listing the traits of diagnosis that you relate to. You might want to ask friends, family or partners for their observations, although be aware that sometimes it can be hard for the people around us to say these things. Unfortunately, there are still a lot of stereotypes but that’s why asking people close to you to watch the show is a great opportunity to start to change those ideas.

Once you have your list, you can start pursuing a diagnosis. In the UK, we can go straight to our GPS and ask for a referral for a diagnosis. Sadly, as was mentioned on the show, waiting lists can be long and there’s not always the expert knowledge in diagnostic teams – this is why so many of us haven’t been diagnosed already. You may wish to peruse a private diagnosis if you have the means to do so and want a quicker process – I personally got diagnosed at the Lorna Wing centre and had an incredibly positive experience.

One of the most important things to know is that within the autistic community, we are very welcoming of people who self define as autistic because of the systemic issues people face in accessing diagnosis. The “official” diagnosis helps a lot of us have that peace of kind and self understanding that can be so essential for our wellbeing, but ultimately, it isn’t the diagnosis itself that makes us autistic. If you’re autistic, you’re autistic – it’s the way your brain is wired and that won’t change.

 

Ryan; Could you tell us, did you have a favourite moment during the production of the show? Perhaps a behind-the-scenes moment that made you realise “wow, what we’re doing here could be huge”?

 

Emily; I have a lot of favourite moments from working in the show, although I’ll be honest and say I never expected it to be as popular as it’s been! One of the highlights for me was that the show has bright some incredible autistic women into my life – there’s so much solidarity and encouragement to be found in connecting with people who understand the world like you, and that’s been a wonderful experience.

And the night of the show itself airing was wild – my Twitter was non-stop all night and the overwhelming majority of it was positive and encouraging. That’s the thing that makes me think that this show is actually something quite special and important.

 

Ryan; finally, is there anything you would like to add, that we perhaps haven’t asked about?

 

Emily; I think it can be hard sometimes when shows about autism are put out. It’s understandably a very emotional and triggering topic for many of us on the spectrum – from doctors who don’t believe us to experiences of bullying or ridicule, autistic people have often been through a lot. Sadly, there have been times where the medical profession has not helped with that and times where the media has continued to reinforce those narratives.

Change is slow and that can be extremely frustrating – one of them moments I was personally most disappointed with was when I referred to “having autism” instead of “being autistic” – a hangover from over 10 years of working in the autism profession and also perhaps a little bit of nerves (and it was flipping cold). The show for me was a net positive. Was it perfect? No, but then again, what is? Sometimes change has to come through working with those imperfect methods, by being the people to do some of the gentle challenging. That’s not to say that anger isn’t a valid and legitimate tactic, but i personally try to find the ways to work with people and bring the change about from within. It’s a slow process but I’m hopefully that ultimately, we will start to see a change in the world that means as autistic people we aren’t just known about but fully acknowledged and accepted as who we are.

 

 

 

Spinnaker Tower, Going Gold!

Autistic UK is proud to announce that the Spinnaker Tower in Portsmouth, Hampshire will be lighting up and Going Gold on April 2nd, World Autism Awareness Day.

This is an open invitation to any who wish to join us there to celebrate the day and show their support for Autism Acceptance. We extend a welcome to all Autistic persons of all ages along with their parents, families, friends and supporters.

Wear something yellow/gold or bring balloons of that hue. Paint a picture, your face or whatever you want as long as you are there to wear, display or hold your choice of showing support.

To find out more about the Going Gold campaign, go to our website at the address below. There will be more detail about the running order when we are better able to know how many people will be coming, so keep an eye out on https://autisticuk.org/going-gold-for-autism-acceptance/

Directions to the Spinnaker Tower can be found on its website here; https://www.spinnakertower.co.uk/plan-your-visit/how-to-find-us/

We hope you will come on the day and join us in first thanking the Spinnaker Tower for their support on this.

We will see you there!

 

 

link to the event; https://www.facebook.com/events/2233686840206985??ti=ia

Does ABA harm Autistic People?

By Shona Davison;

Shona is an Autistic mum to two autistic children. She is Studying for an MA in autism at Sheffield Hallam University. Interested in educating others about autism.

Content Warning: this article discusses depictions of torture and abuse.

Applied behaviour analysis (ABA) is a behavioural therapy which has the goal of changing observable measurable behaviour, usually by manipulating antecedents or using reinforcement (usually positive reinforcement as negative is less commonly used now). Data is used to see how the rate of behaviour changes from these manipulations.

Manipulating environments and consequences in order to influence behaviour perhaps sounds harmless and similar to how many people parent? I do not believe it is harmless though – ABA has a murky history, which I discuss below.

There is not one universal definition of ABA, some therapists use the term more loosely than others and in the US some therapies are given the name ABA in order to access insurance funding. This article may therefore not be referring to your ABA. Some ABA providers have the problematic goal of making autistic people ‘indistinguishable’ from their non-autistic peers. If the provider you are considering using has that goal then this article most likely is referring to your ABA.

Many autistic people speak up against ABA but our smaller numbers and pathologized identities mean our voices often go unheard or ignored. Advocating against ABA can elicit a barrage of criticism – even against those who have first-hand experience and are describing their own personal trauma.

I see the popularity of ABA as a symptom of various factors: society does not accept difference; does not understand autistic behaviour or how to support autistic people; and does not trust the autistic person to be able learn without ABA. How has ABA come to exist? The more powerful party (non-autistic people – they have numbers on their side) make judgements about the behaviour of members of the marginalised group (autistic people). They do not like or understand what they see, and decide they need to change it, rather than accommodate it. This does not usually come from a bad place. Often the kindest, most caring people believe the way to help us, is to help us become more ‘normal’. This is what happens when one takes a medical model approach to autism – when one considers autistic people to be broken, disordered or ill. Many of us do have medical problems, but that is not the same as autism being medical.

It is possible to change behaviour using ABA, there is no question of this – though not as effectively as some would have you believe (see Dawson, 2004; Hassiotis et al., 2018, Hughes, 2008). But this is beside the point. We ought to be considering whether we should change the behaviour – which is often harmless and often useful. Quite often the main beneficiary is not the autistic person, it is the people around them.

Dr. Ivar Lovaas considered the goal of ABA to make autistic people ‘indistinguishable from their peers’. This aim puts all the responsibility for change on autistic people. Autistic people try so hard to get by in this world and often that means we compromise ourselves to ‘fit in’ with non-autistics. We force ourselves to do things that hurt us or make us uncomfortable, which partially explains the high rates of mental health problems and suicide in our community. Despite all this effort, we often still stand out as different and so still get judged and criticised. This aim of ‘indistinguishable’ still gets cited by ABA providers. While society strives for this goal – the goal of making us ‘normal’ – our human rights will be violated. Aiming for ‘normal’ is unethical, often unachievable and many first-hand accounts suggest it comes at too high a cost to the autistic person.

Critical thinking

Critical thinking is essential when evaluating any potential therapy for autistic individuals and sadly this is not a skill most people possess. When considering the pros and cons of ABA please ask yourself the following questions:

1. Does the individual who is advocating for or against ABA have any financial or professional incentive to do so?
– Have they been paid to do it?
– Is their career or professional status dependent on them convincing people of the benefits or problems associated with a particular therapy?
– Are they are selling ABA or an alternative to it?

2. Does the author have an emotional reason for advocating for or against ABA?
– Parents who love their children and may have spent a small fortune and given up many hours of their time to support their child using ABA are not going to want to hear that they are inadvertently causing harm. There is a strong emotional motivation to ignore or to discredit anyone who says that they are.
– Practitioners who have chosen careers in good faith because they want to help autistic children, will not want to accept that they are doing the opposite.

3. Be aware of cognitive bias.
– It is much easier to convince somebody of a lie, than to convince them that they have been lied to.
– We tend to believe what we come across first. This is often support for ABA, unsurprisingly, given the size of the marketing budgets behind it’s promotion and the power imbalance between those who advocate for it (often non-autistic people, perhaps parents or practitioners) and those who advocate against it (often autistic people, some of whom have been recipients of ABA).

Bear these factors in mind when considering how much weight to give to an individual’s views. I’m not suggesting people who work in the autism industry (and I do consider it an industry) are automatically untrustworthy – after all building a career out of your passion is something most of us would love to do. I am simply stating that scepticism is your friend when reading anything related to autism.

For the purposes of full disclosure and to aid your critical thinking, I will tell you a bit about me: I am an autistic parent to autistic children. I am in the final module of an MA in autism. I do not get paid for any autism work – I currently give up my limited time for free because I am passionate about helping other autistic people. My view is that ABA hurts autistic people. It is only because autistic people are a marginalised minority group who struggle to be heard, that most people do not seem to grasp this. It strips autistic people of dignity, violates our human rights and is evidence of how so many of the non-autistic population believe that autistic people want to be like them. Most of us just want to be happy. It is hard to be happy when the relentless narrative is that you are broken and need fixing. If I had the option of not being autistic, I would not take it – nor would I take it for my children. That does not mean life is easy for me, it means I like myself and my children the way we are.

History of ABA

ABA has always been controversial. In the 70s it was used to ‘cure’ children who were at risk of developing ‘adult sexual abnormalities’ (i.e. gay or transgender). One study had as its goal to extinguish female ‘sex-typed’ behaviours from a young boy called Kraig (Rekers and Lovaas, 1974). He was subjected to three times weekly treatments of ABA, where his mother was trained to ignore ‘feminine behaviour’ and give him attention for ‘masculine behaviour’. Signs of his distress were described as ‘tantrums’ and the boy ‘putting pressure’ on his mother for her attention. Doll play was relatively easy to extinguish but ‘feminine gestures’ (e.g. limp wrist, hip swaying) remained until ‘spankings’ were introduced. The whole paper is littered with language that shows contempt for the boy: ‘flirtations’, ‘screechy’, ‘brat behaviour’. The language used says so much more about the adults observing and judging the behaviour than it does about Kraig, who was only four years old when treatment started. Reading it 40 years after it was written, I am filled with disgust. I hope and believe that society will look at ABA for autistic people with the same abhorrence in 40 years time.

What about more recent evidence for the use of ABA with autistic children? If I do a search for ‘ABA evidence autism’ and pick a random journal article (Smith and Iadarola, 2015) I find the behaviour of autistic people described as ‘tantrums’ and ‘aggression’. The likelihood of being autistic is termed ‘risk’. Many behaviours that I would consider logical and adaptive given individual sensory experiences are described as ‘symptoms’ e.g. extreme food selectivity. The paper refers to parental and caregiver stress multiple times but not once does it mention the autistic child’s stress. A child who is ‘aggressive’ or has ‘tantrums’ is likely a stressed child. Why do so many people fail to see that? Why do autistic people always get the blame for challenging interactions? Why are we trying to change autistic people and their behaviour rather than changing their environment to reduce their stress? Very often behaviour of parents, teachers and caregivers are a major source of stress for the child and are therefore one of the causes of the ‘challenging behaviour’. We should call all behaviour that challenges someone else ‘challenging behaviour’ rather than just reserving that term for the least powerful party (the autistic person). I am writing this from experience – I know what it is like to parent and teach autistic people as well as to be autistic.

Whilst ABA has changed and evolved over the years it does not hurt to remember where it came from. Here are a couple of quotes from Ivar Lovaas, the ’father of ABA’.

“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person. (Lovaas cited by Chance, 1974, p76)”

When you consider that Lovaas appeared to believe autistic people are not fully human, it is easier to understand his unethical approach to ‘treating’ us. Electric shocks were one of a number of ‘aversives’ used on autistic children. Electric shocks are still used on autistic people in one well known facility, the Judge Rotenberg Centre and are condoned by the Behaviour Analysis Certification Board (BACB) and the Association for Behaviour Analysis International (ABAI). Here is a description of ABA being used on an autistic child called Pamela. It is an extract from the article ‘Screams, Slaps and Love’ in Life magazine (1965):

The most drastic innovation in Lovaas’ technique is punishment — instantly, immutably dished out to break down the habits of madness. His rarely used last resort is the shock room. At one point Pamela had been making progress, learning to read a little, speak a few words sensibly. But then she came to a blank wall, drifting off during lessons into her wild expressions and gesticulations. Scoldings and stern shakings did nothing. Like many autistic children, Pamela simply did not have enough anxiety to be frightened.
To give her something to be anxious about, she was taken to the shock room, where the floor is laced with metallic strips. Two electrodes were put on her bare back, and her shoes removed.

When she resumed her habit of staring at her hand, Lovaas sent a mild jolt of current through the floor into her bare feet. It was harmless but uncomfortable. With instinctive cunning, Pamela sought to mollify Lovaas with hugs. But he insisted she go on with her reading lesson. She read for a while, then lapsed into a screaming fit. Lovaas; yelling “No!”, turned on the current. Pamela jumped — learned a new respect for “No.”

Lots of things come to mind when I read that extract. It is quite clear that the author has difficulty empathising with the autistic child. There is no attempt to understand the reason for the behaviours and motivations are assumed which are almost certainly inaccurate. Why are ‘wild expressions and gesticulations’ a problem? Who are they hurting? I do not believe that Pamela did not have enough anxiety to be frightened. As an extremely anxious autistic person, I know that I express anxiety in ways that many non-autistic people would fail to recognise. Few people can tell when I am anxious, unless it becomes a full-blown panic attack. From my autistic perspective, I would guess that Pamela stares at her hand because she enjoys it. It is most likely a positive sensory experience – no one should have the right to stop her if she is not hurting anybody. And to stop her by electrocuting her, then describing her as ‘cunning’ for wanting a hug when she is upset? Despite, or perhaps, because of this repugnant treatment and disregard for ethics, the therapist gets proclaimed as innovative and pioneering.

Changing behaviour using behavioural techniques is not particularly difficult. Perhaps we should be asking: ‘should we change the behaviour?’; ‘who will benefit from changing this behaviour?’; and ‘are we changing behaviour without addressing an underlying root cause?’.

Evidence based?

There are critiques of the evidence for ABA available online so I will not go into detail here (see Dawson, 2004) but I will comment that when I read research the most obvious thing that researchers so frequently fail to get right are the outcome measures. Interventions get judged by non-autistic standards of ‘success’. If you can speak, have a job, have lots of friends and variety of interests but you are not happy, how is that a successful outcome? Not everybody wants friends or a lot of hobbies! My passions are few but they are very strong, make me happy and help counter-balance stressful elements of my life. If a non-autistic person assessed my life, they may well disapprove or worry about plenty, but that is because humans find it difficult to empathise with people who are different to them. As non-autistic people are the majority, I am fairly well versed in non-autistic ways and I find many elements bizarre. I do not judge non-autistic people for incessant small talk, asking questions when they are not interested in the answer and hugging to say ‘hello’. I accept non-autistic people as they are and would not dream of suggesting they need therapy to be more like me. So why do we have academic papers written by respected researchers where they are judging an intervention by whether it makes the person behave more like a non-autistic person? I find it so difficult to read these papers – to me it is so apparent that they are missing the point. We should be aiming for happy autistic people not autistic people who can pass for ‘normal’. Whilst this basic concept is not understood, time and money will continue to be wasted on research that does not help autistic people but further stigmatises and hurts us.

Another problem with most research is that it does not look at long term outcomes. What is the point in proving that an intervention meets a short term (flawed) goal when we have no idea of the long-term consequences? There is certainly plenty of anecdotal evidence that ABA has long term negative consequences (see further information) and we are even starting to see academic research (Kupferstein, 2018) though we need much more. As we are disadvantaged in education and employment and there is still stigma and risk of discrimination, there are still not as many openly autistic researchers as I would like to see. Autistic people do not usually have budgets for research, or staff devoted to marketing and PR, unlike ABA providers, so our stories may not be as well promoted. Also, there are still people who believe that being autistic means we are unable to advocate for ourselves or others.

Autistic voice

Historically, the voice of autistic people has been stifled. Simon Baron-Cohen wrote in his book Mindblindness (1999) that theory of mind (the ability to put oneself metaphorically in another person’s shoes – an ability he theorised that autistic people lack) is ‘one of the quintessential abilities that makes us human’. The implication, of course, that autistic people are not fully human. Frith and Happé (1999) claimed that our lack of theory of mind weakens our awareness of self. If autistic people are perceived to be lacking self-awareness or not to be fully human then our accounts will be undervalued. Here are some examples that demonstrate how still today some see us as less than human:

1. The person first or identity first debate – why do so many non-autistic people advocate for person first language saying we need to remind everybody we are people first and foremost?

2. Here is an article in Psychology Today where we are described as ‘undomesticated humans’ – the author Christopher Badcock believes this is preferable to being described as aliens (another dehumanising term). We are even compared to Siberian foxes.

3. Ian McClure a psychiatrist who is influential in the treatment of autistic people (he chaired the SIGN 145 guidance and was an external reviewer for the NICE guidance), spoke at a national conference where he described autistic people as ‘not quite right’, ‘causing havoc’ and ‘emotionally stuck at the level of a 2 year old’. He suggested that ‘two human species came together’ and we ended up with ‘a genetic mess’. Click here for the transcript of a 10 minute edited version.

There is still a long way to go before autistic people are afforded equal rights and respect. It is hard being autistic and constantly having to defend yourself against these views which often come from autism professionals – the very people who are supposed to be serving us.
Recent research suggests that autistic adults should be considered experts on matters relating to autism (Gillespie-Lynch, Kapp, Brooks, Pickens and Schwartzman, 2017) so I recommend that parents seek to connect with them in order to understand their child and how to support them.

Conclusion

If you are considering ABA for your child please research widely on the topic, including views from autistic people. Remember to be critical of everything you learn on the topic. You can only come to a balanced view if you take the time to do this.

There is too much anecdotal evidence saying that ABA harms autistic people to just brush it under the carpet. There is also some academic evidence that ABA causes harm. Hopefully the growing number of autistic academics will mean that more research will be done in this area – improving quality of life is a common theme in the research that autistic people tend to prefer, contrary to where the funding goes (research on genes and finding causes).

Most people can see how unethical it is to use ABA to teach gay people to behave like straight people. Why then is it still deemed acceptable for autistic people? I have never heard a good answer to the question.
Anxiety, depression, post traumatic stress disorder and other mental health problems are not an inevitable part of being autistic. They can be avoided and I believe the best way is with love and acceptance. A stressful childhood is not conducive to good mental health and wellbeing.

Trust that understanding and accepting developmental difference does not mean that your child will not progress.
As Beardon (2017) states:

“Autism + Environment = Outcome”

One can’t change the autism, so in order to improve the outcome, one needs to focus on changing the environment.
Every autistic person deserves to be loved and respected for being their authentic autistic self.

Further information

Relationship between trauma and ABA – anecdotal evidence
An open letter to families considering intensive behavioural therapy for their child with autism by Virgynia King and Bob King.

Part 1:
http://www.astraeasweb.net/politics/aba.html
Part 2:
http://www.astraeasweb.net/politics/aba2.html

The truth about ABA:
http://autismmythbusters.com/parents/therapy/the-truth-about-aba/

Relationship between trauma and ABA – research evidence

Evidence of increased PTSD symptoms in autistics exposed to applied behaviour analysis. Kupferstein, (2018)

https://www.researchgate.net/publication/322239353_Evidence_of_increased_PTSD_symptoms_in_autistics_exposed_to_applied_behavior_analysis

First-hand accounts of ABA

My thoughts on ABA – Amy Sequenzia:
https://autismwomensnetwork.org/my-thoughts-on-aba/

Are there any adult autistics who are willing to share their personal experience of ABA therapy?
https://www.reddit.com/r/autism/comments/50bhcd/are_there_any_adult_autistics_who_are_willing_to/?st=isida1k8&sh=4b2e6577

Quiet hands by Julia Bascombe:
https://juststimming.wordpress.com/2011/10/05/quiet-hands/

References

Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, Mass: MIT Press.

Beardon, L. (2017). How can unhappy autistic children be supported? Retrieved from https://blogs.shu.ac.uk/autism/2017/07/03/presentation-by-luke-beardon/

Chance, P. (1974). “After you hit a child, you can’t just get up and leave him;
you are hooked to that kid”. O. Ivar Lovaas Interview With Paul Chance. Retrieved from: http://neurodiversity.com/library_chance_1974.html

Dawson, M. (2004). The misbehaviour of behaviourists. Retrieved from http://www.sentex.net/~nexus23/naa_aba.html

FRITH, U. and HAPPÉ, F. (1999). Theory of Mind and Self‐Consciousness: What Is It Like to Be Autistic? Mind & language, 14 (1), 82-89.

Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? evidence for autistic adults as critical autism experts. Frontiers in Psychology, 810.3389/fpsyg.2017.00438

Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I. S., Crabtree, J., and Cooper, V. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: cluster randomised controlled trial. The British Journal of Psychiatry, 1-8.

Hughes, M-L. (2008). ABA – Giving Science a Bad Name? Retrieved from: https://thepsychologist.bps.org.uk/volume-21/edition-5/letters

Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behaviour analysis. Advances in autism, 4(1), 19-29.

Rekers, G. A., & Lovaas, O. I. Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 1974, 7, 173-190.

Smith, T., & Iadarola, S. (2015). Evidence Base Update for Autism Spectrum Disorder. Journal of Clinical Child & Adolescent Psychology, 44(6), 897-922.

Autistic UK Statement on proposed closures of SEN schools in Belfast;

Autistic UK Statement on proposed closures of SEN schools in Belfast;

Autistic UK would like to place on record it’s grave concern at the announcement by the Education Authority in Northern Ireland on Monday, to close SEN schools and to create three larger so-called “super schools”.

Autistic UK believes this is simply a cost-cutting exercise that is being dressed up as a “transformation” of services.

Increasing school and classroom sizes has tended to have a negative effect on the educational standard a child receives. This also has the potential to have classrooms made up of children with widely varying needs, which will mean that it is not possible to give each child the specialised support they require.

Autistic UK further notes that the Education Authority’s decision to announce this plan on a public holiday gives the impression that this plan was not something they wished to see receive media attention.

Parents have only found out through the media that their child’s school may close, and this has sparked widespread panic, upset and anger.

Autistic UK is calling upon the Education Authority to give parents and schools accurate and honest information, regarding these potential school closures.

Autistic UK also urges the Education Authority to ensure that stakeholders will be given enough time to adequately respond to the proposals.

Going Gold For Autism Acceptance

Julian Morgan

Why a Gold Infinity symbol?

Over the last year or so, I and a few others have been ghosting our way around the online autistic community with good intentions. Not to be all stalker-y here, honest, but we wanted to find a constant thread that the authentic, Actually Autistic voice spoke. I’m the one who got the job of sticking his head above the parapet and revealing our efforts and their results. I always get the short straw; Is it ‘cos I is Autistic?

This is not intended to be just for April. The idea is to have a common thread that runs through all groups, advocates and supporters that was easily recognised, different and came from the autistic community, not from those who think they speak for us.

The Gold Infinity is for use on ANY work, event, campaign, fund raising, whatever! It is meant as a symbol of authenticity, declaring support for acceptance all year round and stating this message came from an authentic autistic voice. We can self-police those who may abuse it. Social Media is a wonderful thing…

So how did we get here?

Âû

The Âû suffix has become quite common in its use as it uses the Autis(tic)(m) = Au* = Gold idea to self-identify and as a community had started #LIUG, Light it up Gold, in response to Auti$m $peak$ (A$). This was not the only use of Gold or Au we found, but it was the most common and seemed to have struck a loud chord in many groups and individuals in other countries as well as the UK.

*Au is the International Chemical Symbol for Gold from the Latin name Aurum.

The only other colour in serious contention was the Red Instead idea, also formed as opposition to A$, but without the larger base of support Gold had acquired. Nor did we really find a reason for red past expedience, its opposition to blue (A$) and it makes for a great hash-tag. There was no direct symbolism with Autism we could find amongst its supporters.

 I should take the time to make it very clear that the idea here is not to replace or ignore others efforts and campaigns and symbols. We support them for their commitment to acceptance and the work they do to achieve this. We ALL contribute to the whole; we ALL support efforts in raising awareness of Acceptance from any who support Actually Autistic people.

A rainbow coloured infinity symbol, the symbol of the neurodiversity movement.
The rainbow infinity symbol, which denotes neurodiversity

The use of the infinity symbol came from the growing popularity of it in spectrum colours to promote Neurodiversity. The idea of endless possibilities and untapped potential resonate through this symbol providing a simple and recognisable concept in one.

Autism is itself a spectrum, but we were looking for a unique identifier (without needing to ‘cure’ it). So the idea of combining the two came to the fore. If Autistics use Gold, then other Neurodiverse communities can use their choice of colour too. Slap it on an infinity symbol and it makes up part of the Neurodiverse Spectrum.

We hope this concept is also pleasing to the other unique Neurodivergent communities out there.

At the end of the day, you can design your own version and use it how you wish as long as it is an authentic voice using it to promote acceptance and abides by the guidelines. It is Gold and it is an infinity symbol. It is for Acceptance.

A gold infinity symbol with hands clasping in the middle

Autistic UK and other organisations and advocates have banded together to support ‘Going Gold’ for Autism Acceptance.

However, there are guidelines…nice and simple ones.

    1. You use the gold infinity symbol on ‘Going Gold’ campaigns and fundraising stuff. Design and size does not matter just as long as it is gold and an infinity symbol. I have put Autistic UK’s version, which reflects our logo, below as an illustration, design your own if you like.
  1. Call for Autism Acceptance. Awareness is spreading and UK local authorities and housing associations and Service Providers etc have finally got the hang of awareness, so time to turn to the next, Acceptance.

Please Note; The autistic community does not support ANY abusive, quack ‘cures’ like MMS/CDM, GcMAF, Chelation, turpentine, ABA (Dog training for kids-see research on PTSD below) or any other abusive therapy used to obviate our autistic identity. If you support any of these things, please do not use the gold infinity symbol as you will be stealing our voice for your own purposes and not benefiting autistic people at all.

Finally, and not a guideline but a constant; No one person or group owns this campaign.

It is a gift to all user led groups, autistic advocates and allies whoever they may be from a collective of autistic groups and individuals. This symbol comes from a collective autistic voice and is given freely to the autistic collective out there.

So grab your gold infinity symbols and start pushing. Have a Gold theme to your events, Go Gold and spread the word, wear gold and share on social media, it is up to each group and individual to spread the symbol, message and colour of acceptance as they wish.

There are no political boundaries here, so anyone in any country who supports Autism Acceptance is invited to participate.

One last request; please do not put your gold infinity symbol on a puzzle piece or combine their use. We don’t like puzzle pieces. Like awareness, they are sooo last year!

National Diversity Awards; Emma Dalmayne

Autism Rights Campaigner Emma Dalmayne has been nominated for the ‘Positive Role Model Award – Disability’ Award, as part of the National Diversity Awards.

 

We are urging all of our supporters to vote for Emma to win this award. Here at Autistic UK, we believe that Emma’s sterling work to protect Autistic People from toxic and poisonous ‘Autism Cures’, deserves to be recognised.

 

To vote for Emma, click on the following link, and then follow the on-site instructions;

https://nominate.nationaldiversityawards.co.uk/nominate/endorse/31945

 

 

My name is Emma Dalmayne. I am an autism rights campaigner, I campaign against abusive autistic treatments and ‘cures’.

I am Autistic myself,when I was diagnosed with Aspergers at age 37 it was such a relief, to know and understand why I had always felt like I had wondered into a conversation or situation everyone else had prior prompting and scripts too!

My youngest son was diagnosed before me which led to me opening a Facebook support group for autistics and parents/carers. I became aware that not all parents are as accepting of Autism as I after seeing a group named CD Autism on Facebook. I began campaigning against autistic mistreatment, in particular MMS which is chlorine dioxide bleach being used in enemas and oral solution to ‘cure’ Autism.

I have worked with the BBC, BEN TV,The Independent, The Mirror, Victoria Derbyshire Show, The Guardian, The Times and London Live to expose this vile abuse. I have infiltrated Facebook groups under fake profiles to find out where these parents are who are using these vile torturous treatments on their vulnerable autistic children and adults.

Once I know, I report them to the police and social services. This has resulted in two children being removed from abusive homes. It also has the back lash of me receiving threats of rape and death. I have had trolling emails and messages, Twitter abuse and phone calls, vile blogs written about me. Thus is what we as campaigners endure

I have spoken before the Public Policy Exchange and the NHS Advisory Committee. We are working on a leaflet to be handed out in hospitals and paediatricians with red flags listed for MMS abuse. I have reported countless abuse cases worldwide, it greatly hurts me to look at my own autistic children and think if they had have been born to the wrong families…who knows.

It’s not only bleach being used on autistic vulnerables, it’s turpentine, borax, kerosene, GcMAF. So much pain being caused and for nothing.

There are harmful ‘therapies’ using compliance :

And more dangerous substances here:

http://www.dailymail.co.uk/news/article-4795094/NHS-worker-fed-toddlers-TURPENTINE-cure-parasites.html

I made a petition asking that the government make touting, selling or using fake cures illegal in the UK. It now has 60,500 signatures here:

https://www.change.org/p/phillip-dunne-make-autistic-cures-illegal-in-the-uk

This led to this piece here;

https://www.theguardian.com/society/2016/jul/13/fake-cures-autism-prove-deadly

And then many more, sadly because of the amount of parents I was reporting.

https://www.mirror.co.uk/news/uk-news/brit-kids-forced-drink-bleach-11924623

I recently went to the National Autistic Society for a meeting with to ask them again to please consider backing legislation. They finally, after four years, agreed. I was accompanied by Kieran Rose and Richard Mills. The meeting can be heard here;

https://youtu.be/Wx836G_nBrk

I was consulted on the Westminster Autism Commission survey for fake cures and I have been invited to the launch on the 28th of March to parliament for the resulting report.

I love to write! I began writing a few years ago and have a website called www.autisticate.com 

I have had the joy of having my first book published!

It’s called ‘It’s An Autism Thing I’ll Help You Understand It’ and you can see it on www.stass publications.co.uk

I wanted, no needed parents and professionals to see things from an Autistic perspective, and to help them understand behaviours and self stimulation.

Too many times I’ve seen the urge to understand stifled in the curious as they are palmed off with ‘It’s an Autism thing, you wouldn’t understand it!’

I thought well let’s help then to! Hopefully the empowerment the parents and carers will feel can help make their charges feel more understood and supported.

I continue to write with and have another two children’s books, one published called Susie Spins,a book to educate children about their autistic peers, and another penned and ready to go.

I have opened an organisation called AIM – Autistic Inclusive Meets. www.autisticinclusivemeets.com

I have a wonderful diverse board of directors, a mix of autistic and neurotypical.

Our aim is to encourage and support autistic individuals out into the community in inclusive environments. We run a weekly playgroup that is well attended by autistic children right up to teens along with brilliant autistic adults that volunteer their time to interact with the children and help advise the parents.

We have meals out and sensory friendly discos,we are not are open to all boroughs and take pre-diagnosis. All people with disabilities are welcome.

We have recently been very lucky to gain some support in raising funds and spreading autism acceptance from Nandos 02!

Thank you for reading!

Emma

 

Autistic UK Statement re; Huffington Post Column.

 

Autistic UK would like to place on record our disappointment at the words used in a recent column, published in the Huffington Post.

 

Autistic UK does not believe that in 2018, it should be acceptable to use Autism as some sort of insult or a way to denigrate and belittle those with whom you disagree. Autistic UK calls upon Mr Meagher to recognise the implications of his words, and to issue a full apology.

 

We would also encourage those that shared Mr Meagher’s article to acknowledge that this sort of language is not acceptable in modern discourse, and we would be happy to engage with any individuals who would wish to learn how to avoid this happening again in the future.

 

Additionally, we would also like to extend a formal invitation to Mr Meagher to attend one of our AUK events, so that he can see for himself his stereotype of Autistic people is false, and learn something from this whole experience.

What’s in your bag? A Conference Survival Pack;

Lydia Wilkins is a trainee journalist and Blogger. She blogs to document her Asperger’s Syndrome. Her hero is Harold Evans (investigative journalist). Her special interest is the poetry of Sylvia Plath.  Lydia’s blog can be found at Mademoisellewomen.com

 

 

 

What’s in my bag for conference day?

 

My name is Lydia Wilkins; I am eighteen, and I have Aspergers Syndrome. I document this over on my blog at mademoisellewomen.com.

 

One of the things that I find hardest is to adapt to situations-be it social (when I was at school), or getting a train from A to B. Usually this takes a lot of planning-I talk my route through with someone, write instructions out, check train websites in case of strikes.

 

But I also think that being prepared with what you bring along with you can be a big help. For that reason, I am going to show you what’s in my bag for conference day. (Sadly I can’t come as I live too far away, and I have the exam that day. However, this is what I take with me to any other event in my capacity as a trainee journalist and as an individual with Aspergers.

 

The bag:

This is the bag I keep for ‘best’-to be smart, I guess. It’s from New Look, and you can buy it here.

The idea of the bag is to carry all I need for the day, but also to be comfortable-so not too weighted, and not to go against my sensory needs. (Some material I cannot stand the feel of.)

 

What’s inside?

 

A Picture of the contents of the Author's bag.
This is what’s inside my bag!

Short answer: a lot. There’s a lot of stuff-some things are essential, but some are for me to adapt to my surroundings:

Essentials for travelling:

 

When travelling, I usually make a list of what to pack first, as not to miss out what is essential. In my bag you can see my purse (in blue); this has money for food, if there’s an emergency, etc. Towards the front you can see my ‘travelling essentials’; tickets, a card holder (for railcard, said tickets, and my press cards), and underneath is the instructions for travel. I also take a phone charger with me in case of emergency. Oh, and my door key.

 

For the conference:

 

I have a notebook with me (although I do take it with me wherever I go.) The notebook with books on the front is acting as my jotter-so, if there’s anything important, like a guest speaker or lecture, I can take notes. It’s also an important tool for networking. I also have a collection of pens. So I don’t run out, and I have a variety to suit me-a Bic makes my handwriting neater, but a pencil is for doodling. I also take a perfume bottle (albeit tiny) with me; there are also a variety of lip products. This is to be a little bit more professional by blending into, and adapting to, my surroundings. There’s also the post-its for quick jottings.

 

For me being on Spectrum:

 

A lot of what is in my bag derives directly to me being on spectrum, and the need to adapt to new surroundings:

 

Planner: This is my moleskin daily planner (hardcover, large). It keeps track of all my appointments. As well as this, it also notes when my blog posts are going live, when members of my family are away, what time to get trains, etc. Without it, I would be lost.

 

Dr Paw Paw: Can you see the pink peach tube to the left  (bottom) of the photo? This is a multi-purpose balm, and is one of the few products that meets my sensory needs. It can sculpt hair, as a blush, as hand cream, for dry skin.

 

Headphones: Noise is overwhelming. Plugged into my phone, this blocks this out. And it’s useful for on the train.

 

What is in your bag?

Autistic UK Launch

Tickets available at the link Below!

 

https://www.eventbrite.co.uk/e/autistic-uk-re-launch-and-information-day-tickets-41470904592

 

 

Autistic UK is transforming from an unincorporated voluntary organisation into a Community Interest Company. This means we will be able to expand greatly on what we can do to further equal rights for autistic people and educate society about us. The possibilities really are limitless!

Obviously, the event will be an update of what we have done over the last year, plus lots of information about the conversion to a CIC and lots of opportunities to ask questions. There will also be opportunities to sign up to become a member of Autistic UK during the event. This is a great chance to join Autistic UK as we start an exciting new chapter in our organisation.!

We will have a few stalls available for information/vending, so if you know anyone who would like one, tell them to get in touch.

We will be meeting at St. Thomas Centre, Ardwick Green North, Manchester, M12 6FZ from 10:30am to 4:00pm. The building is fully accessible and we will have the main hall as well as two quiet rooms at our disposal. Detailed information about the venue is available below.

 

Venue

The venue is St Thomas Centre, a Grade 2 converted church. Although it is close to Manchester City Centre, it is in a green and peaceful area. The unofficial name for the street is “voluntary sector row”, as many voluntary organisations have their headquarters there.

Wi-Fi is free and smoking is not allowed in the building.

The website of the venue is here http://www.stthomascentre.org.uk.

You can take a “virtual tour” of the venue via google street view by clicking on this link http://www.stthomascentre.org.uk/our-rooms and selecting the “Tour” tab. The Event will be held in the Main Hall, which is directly down the corridor from the reception.

Address

St Thomas Centre, Ardwick Green North, Manchester, M12 6FZ

Reception number:

0161 277 1010

Co-ordinates: 53.4742427,-2.222962

Parking

There is on-street parking around the St Thomas Centre, but this can get really busy. Therefore, the venue has secured dedicated car parking space approximately 5 minutes’ walk away for visitors to the St Thomas Centre. The parking charge is £2.50 (all day). When arriving at the Power League Car Park, you will need to pop into their reception for two tickets; one to be displayed in your car, the other to hand in with your payment of £2.50 on arrival at the St Thomas Centre.

The Power League Car Park is on 20 Union Street (Postcode is M12 4JD) To get from there to the venue, go down Brydon Avenue (the street opposite the entrance to the car park), then turn left down Cotter Street when you reach the end of the avenue, and right when you reach the end of Cotter Street.

Directions by Car

Leave the M60 at exit 12 and join M602 at Salford. At the end of the motorway follow A57 Manchester (Eccles New Road becoming Regent Road). Drive for 3 miles then fork right under railway and join A57(M) Mancunian Way. Continue along Mancunian Way following signs for A6 Sheffield/Stockport/Ardwick, turn right at traffic lights, pass under fly-over, and travel approx. 200 metres, turn left at Ardwick Green North, turn first right, keeping the park on your right. The St Thomas Centre is approx. 100 metres on your left. Please see the map below.

Map to the AGM

Map to the AGM

Directions by foot

On Foot – (0.5 miles / 12 minutes) take the Fairfield St exit from Piccadilly Station. Walk straight ahead and cross Fairfield St by the pedestrian crossing (ignoring the crossing to the right). Follow London Road under the railway bridge. Continue past the McDonald Manchester hotel following the sign for the A6 to Stockport. Cross under the flyover (Mancunian Way) and London Road becomes Downing Street. Continue past Storage King and the School of Sound Recording until you arrive at Ardwick Green North. Turn left past the army base and follow the road around to the right behind the park. The St Thomas Centre is the church building on the left set back from the street next to Cotter Street. Please see the map below.

map to the AGM Venue

Map to the Venue

Directions by bus

Take the Fairfield St exit from the station (signed “local buses”). As you leave the station by the taxi stand the bus stop is immediately on your right on the same side of the road. You can take any of the bus nos. 192, 196, 201, 203, 204, or 205 and ask for Ardwick Green. The journey takes less than 5 minutes and is operated by Stagecoach Manchester.

Directions by Rail

The closest railway station is Manchester Piccadilly, which has direct train services to most parts of the U.K.

If you arrive in Manchester Victoria, Piccadilly Station can be reached by tram.

Train timetables can be found on www.nationalrail.co.uk.

Directions by Coach

National Express stops in Shudehill Interchange Coach Station, there are frequent Tram Services from there to Manchester Piccadilly Station.

www.nationalexpress.co.uk

www.megabus.com

Nearest Airports

The closest Airport is Manchester Airport which has a direct rail link to Manchester Piccadilly which takes around 20 minutes. From Liverpool John Lennon Airport, you can take the 86a bus to Liverpool South Parkway, which has many trains to Manchester Piccadilly. Total journey time is 60-90 minutes.

Local Accommodation

There are many accommodation options in Manchester City Centre, ranging from a bed in a hostel dorm to five star hotels. The cheapest accommodation for single rooms is easyhotel in Newton Street (£44 per night) and Ibis budget on Pollard Street (£49 per night). Cheaper accommodation may be found further away from the city centre.

You can find local accommodation on websites such as www.hotels.com www.booking.com www.lastminute.comwww.trivago.co.uk www.laterooms.com and www.hostelbookers.com.

Accommodation books up very quickly in Central Manchester though so if you need to stay anywhere overnight, please make your bookings ASAP.