Issue 16: The SEND Practitioner

The SEND Practitioner

Issue 16
An autism special issue
for the Autism Show

June/July 2016
With Dr Temple Grandin, Steve Silberman & Dr Sue Sheppard

Editorial

To celebrate the Autism Show, I am pleased to present this autism special issue, featuring a selection of key pieces curated from previous issues of The SEND Practitioner.

In this issue:

  • Dr Temple Grandin answers the important autism questions on: her life and representation in HBO’s eponymous movie, sensory issues, transition, interventions, early diagnosis, labels, gender inequality, and breakthrough and motivational strategies. Read more…
  • Steve Silberman tackles the really big questions on: inclusion, causation research, gender personalisation in education, Lorna Wing’s legacy and the future of autism. Read more…
  • Dr Sue Sheppard (our resident specialist educational psychologist in autism) discusses: Lorna Wing, autism in the UK, the importance of good training, our modules on Autism Spectrum Conditions and our MEd SEND Programme, and the future of autism in our schools. Read more…

The expertise in this issue is just the tip of the iceberg of a raft of Q&As from globally recognised thought leaders across the SEND spectrum. So, if you enjoy reading this publication, sign up to receive it hot off the press straight to your inbox regularly throughout the year. And, if there is anything that you would like to see covered in future issues, please do email me directly.

As ever, please do let me know if you have any questions, queries or comments; it would be good to hear from you.

Kind regards,

Edward Farrow
Editor
edward@realgroup.co.uk

PS: As above, if you do not currently subscribe to this publication, but would like to receive it in your inbox, please do sign up. Also, if you want to receive the latest updates on SEN and The SEND Practitioner, follow us on Twitter.

Table of contents

A Q&A with Temple Grandin on autism and her life and times

Neurotribes A Q&A on autism with Steve Silberman

A Q&A with Dr Sue Sheppard on autism, training and Lorna Wing

A Q&A with Dr Temple Grandin on autism and her life and times

1. A reader’s question: I found your story fascinating, compelling, inspirational and moving. Are you pleased with the way that you were portrayed on-screen? Is it an accurate representation of your struggle to be understood?

“I really liked the way that they did the HBO movie [Temple Grandin (2010)] and portrayed all of my projects with great accuracy. Their depiction of autism was equally accurate in terms of mannerisms, anxiety and visual thinking. The main characters were also based on real people. They had switched some things around, but they had to as it’s only a two-hour movie. For example, whilst I did have a blind roommate, she was in graduate school rather than in college. They not only switched that around, but the graduation scene that you saw in the film was actually my high school graduation in real life. To add to this, at my real graduation, I actually spoke the song rather than sang it. But these were minor changes made with a feature-length movie in mind.

“What is critical, is that the stuff that’s most important to me appears in the film. You know, I’m really interested in the things that I built and in getting kids interested in engineering. It’s these things that really turn me on.”

2. A reader’s question: How involved were you in the entire process?

“Emily Gerson Saines, the producer, is the mother of an autistic child and she wanted this movie to be absolutely right. It took her many years to get the project together and to find the right team of people with Mick Jackson, who was the excellent director. I spent a lot of time with Emily, Mick and the writer in preparation for the movie. Then, when the production started shooting, I was only on set for two-and-a-half days to make sure that the dipping vat scenes were done right. Why? Because the dip vats (without chemicals) and the equipment were real and I needed to make sure that nothing went wrong with the cattle. That was my main task on set.

“It was great. They had the right team and it all worked so well that I didn’t feel the need to meddle. In fact, when I was on set, it was so weird watching Claire Danes play me that I had to move away and observe her performance through the monitor. I was just concerned that I would ‘weird her out’ if I stood there, and thought that it would be easier for her if she couldn’t see me. Claire was great, she spent a lot of time practising and used age-old tapes that I sent her going back to 1988. As part of this, she also videotaped me for half a day.”

3. A reader’s question: The film and your life story detail a compelling narrative of triumph against the odds. How did you and your family find the strength to fight being written off?

“My mother’s old fashioned ‘50s parenting helped me a lot. I was taught such things as table manners and how to shake hands and had plenty of time for free play and making things. I was always encouraged to be creative and had some great mentors along the way – like my science teacher (an ex-NASA scientist) and my aunt at the ranch, who were both portrayed beautifully in the movie.”

4. A reader’s question: You have helped us to understand the importance of sensory issues in autism. What do you consider the most pressing issue in this field?

“We really need to figure out how to desensitise sensory problems effectively. In 2013, Behavioral Neuroscience published an interesting paper on this topic called: ‘Environmental Enrichment as an Effective Treatment for Autism: A Randomized Controlled Trial’. This sets out the significance of stimulating two senses at the same time, like maybe touch and smell. In this way, a lot of emphasis can be placed on touch and smell, or a child with autism can listen to classical music and smell some aromatherapy. Whatever dual stimuli are chosen, one must always keep changing the stimuli. So, for example, the next change in stimuli might be combining music with touching carpets. It’s a really simple, inexpensive treatment tweak, but psychologists noticed real improvements in some sensory problems when they used this method.”

5. A reader’s question: We all know how hard transition is for those with autism. A student leaves high school, starts college and has to deal with a new environment and strangers asking questions. For some, the sensory overload is simply too much. In your experience, what are the best ways to aid transition?

“Transitions need to be gradual, not surprising and certainly not sudden. Sometimes, with little kids, you can do something as simple as having a rocket countdown. If they’re older and transitioning into work or college, again, things need to be gradual. However, one of the most critical deficits faced by those who find transition difficult, is that some of them may not have worked in jobs before they graduated from high school. Ultimately, of course, it’s about ‘no surprises’, but to prepare them to be resilient to surprises, you’ve got to really stretch these kids.

“There are so many community-based opportunities for teenagers to get involved in, whether volunteering as part of a faith organisation or working in a shop store post-16. Whatever the options, transition to college will be smoother if students work in pre-college jobs. Of course, this pre-college course transition will also serve them well after they have graduated from college. Why? Because I’ve seen so many kids graduate from college only to crash and burn in the world of work when they graduate. This is another transition where it’s good not to have surprises.

“I’ve noticed that a lot of college counsellors support college students on the spectrum who have time management issues in college. For example, sometimes they might be late for class or might even lose their homework. This was never an issue with me because the ‘being on time’ mantra was pounded into me as a little kid. This isn’t to pretend that things were easy when I was a kid, as I had social problems. However, despite this, time management was not one of my issues. This was because, in the ‘50s, breakfast was at seven, lunch was at 12 and dinner was at six and you had to be there.

“On a more personal note, my transition was helped significantly by the jobs that I took as a teenager and my broader situation. For example, at 13 I was a seamstress and at 15 I was cleaning horse stalls. When I went out to my aunt’s ranch, my mother gave me a choice: I could go for a week and come home or I could stay all summer – I chose to stay all summer. On top of this, another thing that really helped me with college was that I’d already been at a boarding school, so living away from home was not totally new. Taking all of this into account, my mother’s unwavering ‘50s parenting and her support and encouragement for me to get various jobs stood me in great stead for some of the periods of transition that I would encounter after high school.”

6. A reader’s question: As a SENCO and teacher, what else can we do in education to support people with autism to fulfil their true potential?

“First of all, the question’s too vague. The problem with the autism spectrum is that it’s so broad. You’ve got the Asperger’s kind of kid who may need to take an advanced maths class, is not getting that advanced maths class and is getting bored with baby maths. Then you might have a child who’s partially verbal and then you might have another child who has many more severe medical problems on top of autism. And, of course, you want to see each kid develop in an inclusive environment. But, even the most inclusive approach can throw up a few problems too. For example, I don’t want to see a smart, fully verbal 12-year-old in a room with a very severe kid who’s playing on a computer – that’s not acceptable. In this instance, I’d want to jerk that kid right out of there.

“Ultimately, we’ve got to ensure that these kids can really fulfil their true potential. I see far too many kids becoming a label. In my life, I’ve made a point of going between the silos. I go to NASA and there are people on the spectrum throughout the organisation. Then I go and work on meat-packing plant construction and find many welders on the spectrum. I’ll then go to a tech company in Silicon Valley and I’ll find people on the spectrum right across the company. These are the privileged kids of parents who sent them to Montessori schools, where they were apprenticed into computer programming.

“In short, to support kids with autism to reach their full potential, we’ve got to be much more ‘can do’ and we’ve got to teach teenagers and older children real-world work skills. I’m seeing too many kids getting babied, when they’re not learning shopping, shaking hands, and the kind of basic skills that I learned at elementary school; because in the ‘50s, man, kids learned this stuff.”

7. A reader’s question: How important is an early autism diagnosis and why?

“All these questions that I’m getting are incredibly vague. OK, let’s couch this by looking at three-year-olds. If a three-year-old isn’t talking, then you have to get an early intervention started; period. For the sake of this question, I’m going to diagnose this three-year-old as one who is not talking and who is demonstrating a lot of weird behaviour. Don’t wait, because the earlier the diagnosis, the better the chances that early intervention will make a difference in the medium- and long-term. And you know what, whatever the diagnosis, the general treatment’s pretty much the same – you’ve got to engage them and you’ve got to do things with them.

“I get the same problem when people ask me about horse behaviour. Someone will tell me that their horse is crazy and ask me what I would do about it, but I don’t know what their horse did. I then have to ask five or six more questions before I find out that the only place the horse was crazy was when he was put in cross ties – that’s where you tie a rope on both sides of the holder – and he probably had an accident with the cross ties at some time. So, in this instance, when I knew the particular facts of the case, I advised them not to use the cross ties again. It’s a simple solution to a particular question.

“What is critical here, is that I had to ask five or six questions before I found out that cross ties were antagonising the horse. How could I troubleshoot the problem with the horse until I knew that? You see, that is why I find this question vague. And, ultimately, I think that this vagueness tends to come from people who think in language, because when you think in language you tend to over-generalise. In contrast, I think visually, you know, so when I talk about the horse, I can actually see the horse in cross ties. In fact, as I talk to you about this, I can actually see the particular horse that I’m speaking about; I can also see our equine centre and arena right now.”

8. A reader’s question: Following on from the previous question, should we use labels?

“See, this is what makes me crazy and why I’ve made a real point of continuously going between the silos. Because, one of the problems with special educators is that many of them haven’t been outside of the special education silo. That’s the thing that makes me just crazy because I’m seeing kids where labels help get services. And then you’ve got a very severe low-functioning disabled kid with no speech, epilepsy on top of autism and gastrointestinal issues. And this 14-year-old needs a very different service from a smart 14-year-old who ought to be in a gifted maths class. It’s about breaking things down and being more specific.

“I recommend that a lot of these special educators go and visit a computer company and see what the programmers look like, go and visit a construction site and go and visit an artist’s studio. Why? Because they would see the grown-up versions of some of these kids. They need to go to a construction site, they need to go to a tech company, and they need to hang out with a bunch of artists. They’ll find Asperger’s everywhere, which will maybe give them a different insight.

“And I think that practitioners also need to get a real and different perspective on some of this stuff, because a lot of people in the creative fields are on the spectrum. In my book The Autistic Brain, I talk about the different kinds of minds: the artist’s mind, the more mathematical kind of mind, and the word mind; and fully verbal autistic people tend to fall into one of these three kinds of thinking groups. I would therefore advise special educators to read chapters five to seven of The Autistic Brain – particularly the sections on different kinds of thinking and sensory issues.”

9. A reader’s question: In my experience as a secondary SENCO, I have observed many gender inequalities regarding ASD, such as later diagnosis and less empathy for girls with ASD traits when compared to boys. I am greatly concerned by the later diagnosis of girls, due to the lack of SEN support in primary education and the subsequent impact that this has on them meeting their goals in secondary education. Taking this significant gender gap into account, do you have any advice about making up the lost ground for girls diagnosed later than their male counterparts?

“Again, this is way too vague. First of all, boys act out a lot more than girls. Boys’ behaviour is much more overt, obvious and disruptive and this is one of the reasons why they get diagnosed earlier than girls. And there have been quite a few books written about how girls are different. I don’t think that it’s discrimination, I just think that a lot of girls’ symptoms just aren’t as obvious.

“So, bearing this in mind, I can tell you that what really helped me at high school were shared interests. Whichever gender a child might be, fully verbal children/teenagers with autism in high school and middle school must be strongly encouraged to get involved in areas of special interest with other kids. It could be scouting, robotics, band, choir, orchestra, drama, ballet or karate. This is where I found some of my friends. We rode horses together, built electronic projects together and it had a great impact on me. So, I really would recommend the person who posed the question to get her girls (and boys) involved in shared interests.

“And the other thing that will help them to make up lost ground, as I’ve already mentioned, is that they must start learning working skills – what I call paper-round substitutes. As there aren’t many paper-rounds any more, they should walk dogs, get involved in jobs at their local church, or help out at the local store. Essentially, they’ve got to do jobs outside of the home. Far too many of these kids are too mollycoddled and haven’t learnt basic skills like greeting people and shopping. In short, they are getting over-protected. In sharp contrast to previous generations, when I go to one of my local meat-packing plants, there’s a whole shop floor of hippies getting ready to retire and one of the chaps there is on the spectrum and is the head maintenance guy. He’s been there for years, has always worked and was never mollycoddled. He started as a welder and now he runs the shop.”

10. A reader’s question: Can you identify strategies to help fully verbal high school students with autism become more motivated to study, when they simply do not see the relevance of school work to their lives?

“Well, I was one of those students. I just was not interested. But I had one class that I studied in and that was biology; I loved biology. And my science teacher really helped me to get motivated. He showed me a wonderful movie about optical illusions that was depicted accurately in the HBO movie. Indeed, the movie showed the actual Bell Labs film clip that I watched all those years ago. Following this, my brilliant science teacher started to give me loads of interesting projects and he said: ‘I’m not going to tell you how to make that optical illusion film, I’m going to let you figure it out for yourself’. And then, when he had encouraged me so much that I had discovered that I wanted to be a scientist, he made it clear to me that I would have to take part in all of the other classes if I really wanted to achieve my dream. Through encouraging me in one subject, he enabled me to discover that I wanted to become a scientist and gave me the motivation and confidence to step out of my silo, to chase my dream and succeed. So, in essence, you’ve really got to find something that turns each student on.

“In the US [and this is more of a structural comment than a strategy suggestion] one of the things that’s been really bad is the fact that a lot of the schools removed their trade classes from the curriculum. So auto, woodwork and welding have no place in ‘modern’ education. And yet, we have such a huge shortage of auto-mechanics in the US that the removal of these types of classes is completely counter-productive. How will kids find out whether they like auto-shop if they don’t ever get to take a class? It’s madness really, because whatever situation a child is in, we’ve simply got to expose them to interesting things to get them interested in interesting things. Some parents turn their noses up at skilled trade, which is ridiculous. You know, I’ve got a picture of a jet engine with the covers taken off and it’s really complicated. When I go on a plane I always hope that it works OK, as these planes are so sophisticated that we really do need dedicated people to maintain them. I have such respect for the people who make and maintain aeroplanes.

“And the other thing that will motivate these kids to study is clubs, groups or organisations where they can make friends with other kids with shared interests. For example, one enterprising teacher found out that her kids really liked Star Wars and Star Trek, so she started a Star Wars and Star Trek club in the school, which enabled them to make real friends. How hard was that? It didn’t cost a penny, but it motivated them to form friendships and study – and they did all of this in the cafeteria after school.”

11. A reader’s question: If parents and teachers supporting children with autism feel overwhelmed by battles and behaviour that challenge them, what would be the main advice that you would offer when the situation becomes stuck?

“OK, well, some kids will be really dreadfully behaved. By the time that I was five, we could do normal things like go to a restaurant, go shopping and go to a movie and we could even get to the church without a fit. But you have some other kids where they have very severe behaviour issues and that can be extremely hard for families.

“Let’s look at some specific examples where things might not work. Take a single mum with a new-born baby and a four-year-old autistic kid with a lot of problems. Well, there is no way that she can deal with that, it’s just too overwhelming; so the immediate solution is that she’s got to have someone to help her with her kid. Then, for example, you might have another mum who has a little eight-year-old kid with Asperger’s. He’s a bright kid, but it’s impossible to take him to the grocery store without him having a fit. In this instance, he clearly has sensory issues and sensory issues are extremely difficult for parents. That’s one of the reasons why I put sensory at the top of my list for research. Because, if your child has a screaming fit every time that you go to a grocery store, that makes life doubly difficult for you, your child and your family.

“I had sensory problems but, by the time that I was five or six years old, we could go shopping and do normal stuff. You know, shopping wasn’t the issue, I liked going to the store and then going to a restaurant, which was a real privilege and I never behaved badly in there. Of course, for me and by that age, a temper tantrum equalled ‘no TV for one night’ – that was the rule that was enforced the whole time that I was at school and it worked. But it’s a different situation for those kids who quite literally cannot tolerate a noisy grocery store and it’s extremely difficult to deal with. Ultimately, it’s about gradually getting the child to get some control over the sound so that they can get to a state of mind where they can tolerate it better. But to do this effectively and to enhance the treatment options, there really needs to be a great deal of additional research into sensory issues. My number one research priority is to explore this area in much more detail, so that we can start to really figure out how to treat such sensory issues more effectively.

“The really hard part here is that sensory issues are such a variable area. Take two children with typical autistic behaviour: one of them may have a hearing sensitivity and the other may have a visual sensitivity. This natural sensory variability means that we really shouldn’t be sorting kids by whether or not they have autism, but by the type of sensitivities that affect them – whether visual sensitivity, sound sensitivity or food aversion sensitivity. Ultimately, we need to distinguish them by their sensory problems, not by autism. Because, if you sort them by autism and then you test something like a weighted vest, you’ll find out that it doesn’t work. It might work on ten per cent of the kids, and it will always work on the kids that seek pressure, but it won’t work for those kids who are freaking out in a grocery store due to sound or visual sensitivities.”

12. A reader’s question: What is the most important skill to help an eight-year-old child with social communication disorder achieve?

“We need to ask these key questions, listen to the answers and act on them. So, let’s just break it down.

  • How’s he doing with his friends, is he getting on OK socially?
  • What’s he doing in school?
  • How’s he doing in his classes?

“These questions may seem simple, but I state them off the back of my particular experience in school. You see, I couldn’t do algebra and there are a lot of smart arty kids where algebra is going to hold them back. If this kid has a similar experience, then they should really be allowed to do statistics, geometry or some other type of maths. Fortunately, the college that I attended in New Hampshire allowed the maths requirement to be filled with statistics. I did it, but was helped by a ton of tutoring that enabled me to achieve and build-up my skills. Encouragingly, last month I visited a college in Utah that allows stats to replace algebra.

“If the kid’s older, as I’ve pointed out a number of times in this interview, he really must do some real-world work skills. They have simply got to prepare older kids for the workplace long before they graduate from high school. Why? Because, in my book Different… Not Less, 14 old Aspies tell a series of wonderful stories with one particular thread that runs through them. And the revealing thread that binds each of these stories together is that they didn’t get diagnosed until later in life because they had paper rounds when they were kids. They got jobs and were only diagnosed with Asperger’s through their relationships. So, for me, this is why paper-round substitutes are so critical, because they enabled these Aspies to thrive.”

13. A reader’s question: Do you find that our drive to find scientific, evidence-based interventions for children with autism runs a risk of us undermining their uniqueness and creative solutions?

“Well, I don’t know where I would be if they hadn’t made an intervention and worked on getting me talking. I think that I’d still be unique, because my creative abilities in art were always acknowledged and encouraged, but that early intervention made a huge difference to me. But, of course, you’ve simply got to work with kids so that they can do the basic stuff: like the laundry, eating and shopping. This won’t damage each child’s uniqueness, if a child gets the basics right, then they will have even more freedom and opportunity to demonstrate their uniqueness.

“The thing is, I’ve seen situations where children have liked trains and their teacher has simply tried to stamp their interest out. Let’s use it, let’s read about trains, let’s do maths with trains, and let’s take that fixation and broaden it out; because they need to be able to function and use their special interest as a conduit to greater understanding, learning and function. And, as I’ve said to many tech companies and some of the programmers that they have there: whilst they may not be social and may be on more than $100,000 a year, they still need to be able to function in society and teaching them the basics will really help them and will not take away from their uniqueness.

“I was taught table manners and I can’t emphasise enough how important such things as table manners are. For example, Google has these really nice free cafeterias and you can’t go in there and throw food around and eat with your hands and squash food on the table – that wouldn’t be allowed at Google. In this way, then, instilling basic table manners enables each person with autism to use their uniqueness and function in a setting like Google. Similarly, you can’t get a job at NASA and throw things. In fact, I believe that NASA fired a guy for throwing a briefcase even though it didn’t hit anybody. You can be weird, you can have long hair if you like, but you can’t throw tools. You know, these are things that you just can’t do. If anything, the right kind of treatment can help you to use your uniqueness.

“So, as ever, it’s about balancing real-world practical solutions (such as shopping and table manners) with scientific interventions like Applied Behaviour Analysis (ABA). ABA was a brilliant intervention that got my speech started, but it’s a little kids’ programme, so it’s not appropriate for older children.”

14. A common theme in your advocacy and your professional career is the importance of doing things that make real improvement on the ground. What can SEND practitioners do to make a real difference for those with autism in the future?

“Get out there on the ground and find out what each kid’s problem is. If they’re teenagers and they don’t have friends, get them into shared interest groups: scouting, robotics, creating things with computers, bands, music, theatre; anything. Use their shared interests to help them get friends and by the time that they get to middle school [around 12 to 13 years of age], get them to learn working skills outside of the home. Then, by the time that they are 16, they need to get a part-time job to learn working skills.

“So, to recap, there are two universal things that you can do with fully verbal or mostly verbal kids:

  • Get them involved with shared interests so that they can get friends.
  • Ensure that they start learning how to work long before they graduate.

“Overall, we’ve got to do a lot more thinking about exactly how to get these kids to a good destination. It’s just like planning a trip. You’ve got to do some planning before you get to the end of the trip, or you won’t know where you’re going to end up. The systemic employment problems in this country mean that many kids on the autism spectrum are not getting the opportunities they deserve. In contrast, many of the skilled tradespeople who I have worked with are on the spectrum. They took welding at school and got their first job welding at one of the plants. I know a chap who got a job on the line which he hated. However, using his work skills, he decided to hang out in the maintenance shop and learn every job on the line. Two years later, he successfully applied for a job in that shop.”

15. Do you have any closing comments?

“I’m a big fan of developing the kids’ strengths. If one of them is a mathematician, then I want them to develop their maths. If they’re an artist, then I want them to develop their art and design skills. If they are musicians, then I want them to develop their music. I want them to take the things that they are good at and I want them to be nurtured and developed. How many times must we see a kid who could be a wonderful musician end up playing computer games in their basement? This is not a good outcome. Kids get interested in stuff that they get exposed to; period! So how is a boy going to find out that he likes auto-shop design if he isn’t exposed to it? This is why I think that it’s so important that schools expose their children to a lot of different career opportunities.

“First-hand, I’ve seen this lack of exposure affect how people apply to study at the animal science department of Colorado State University. In our animal science department, and others across the country, around 70 per cent of the incoming college students want to be vets. Why? Because it’s the only animal-based career that they’ve been exposed to. Then, after they have been there for three years, they discover all of the other careers that they can pursue in livestock, which sees those wishing to become vets drop to around 20 per cent. In this example, it’s clear to see that they didn’t change their career goals until they got exposed to other things. You know, they could have been an animal geneticist or a nutritionist if they had been made aware of these options, but they didn’t even know that these options existed.

“So, to conclude, they need to:

  • Empower kids to learn real-world skills before they graduate from high school.
  • Get kids involved with shared interests.
  • Develop the kids’ strengths, take fixations, and expand and broaden them.
  • Carry out an early intervention if a young kid isn’t talking.
  • Finally, and of critical importance, we must carry out much more research so that we can find real and effective treatments for sensory issues.”

About Dr Temple Grandin

Born in 1947, and diagnosed with autism in 1950, Dr Temple Grandin has journeyed from the verge of being institutionalised as a young child, to become a world-renowned author, academic and spokesperson on autistic and animal behaviour. Named one of the 100 most influential people in the world by Time magazine (2010), and played by Claire Danes in HBO’s award-winning biopic: Temple Grandin (2010), she has blazed a trail for those with autism and those who support them.

Read about Temple on her website.

Find out more about Temple’s books.

Neurotribes
A Q&A on autism with Steve Silberman

1. A reader’s question: Is Steve himself autistic? Can a normal person, regardless of their expertise and knowledge, fully understand and feel the day-to-day realisation of simply not belonging – the anguish of oddness?

“Well, I’m not as normal as all that. First, I want to take very seriously the notion that, as a non-autistic neurotypical person, I can’t know what it’s like to be autistic. I think that’s true, I can’t. That’s why I interviewed so many autistic people. And it was also crucial that one of the first steps in my research was to go to a so called autistic retreat called Autreat – where I was in the neurological minority for the first time in my life. There were about 70 autistic people there, creating a culture and physical environment in which they were comfortable. So, for the first time in my life, I wasn’t in a world that was rigged in favour of neurotypicals.

“What did I notice? For one thing, it was very relaxing for me, because a lot of the sensory assaults that we get used to were not there. Autreat was such a comfortable environment and no one was expected to do anything. You were simply invited to participate in the events and it was as wonderful for me as it was for the autistic people there. So, no, I cannot speak for autistic people. You know, when reporters ask me to comment on autism, I often say that they must also interview autistic people. So, I consider myself an ally of the autistic movement, but I’m not autistic.

“That said, however, when I was in high school, I had what was considered a serious form of mental illness. It was even listed in the DSM [the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders] – it’s called homosexuality. I came out to my parents when I was in high school and they were not happy about that. They immediately sent me to a therapist for ‘the cure’ until homosexuality was delisted from the DSM in the early ‘70s. And what’s particularly interesting here is that it wasn’t delisted because of any breaking news in science, but because of political organising by closeted gay psychiatrists and street protestors. I was ‘cured’ of a mental illness by a political movement. So, I certainly know what it’s like to be bullied, marginalised, excluded and to have the nicest aspects of my life described as impairments or forms of mental illness. And now, I’m a happily married gay man because society changed.

“I think it’s no accident that three of the authors who have come to prominence by writing about autism in humane terms – me, Oliver Sacks and Andrew Solomon (author of Far from the Tree) – are all gay. So, if you stop bullying gay people and give them all their legal rights, they can make their way in the world quite easily. It takes more pervasive forms of accommodation for autistic people to live easily. But I think that there’s something in my experience as a gay man that has prepared me to write this book about autism – as it provides a glimpse of the autistic condition through the lens of social justice, rather than through the lens of pathology.”

2. A reader’s question: Given the depth of your research, if you could give three pieces of advice for SENCOs to share with less specialist teachers about how to best support secondary school autistic children in mainstream school classes, what might you say?

“One piece of advice would be to read a book called Uniquely Human: A Different Way of Seeing Autism by Barry Prizant. Barry uses a form of intervention called SCERTS [Social Communication, Emotional Regulation and Transactional Support], which is not like ABA [Applied Behaviour Analysis]. What’s crucial about his approach in Uniquely Human is that, instead of classifying behaviours as autistic and thus problematic, he sees all autistic behaviours as human attempts to cope with an environment that is overwhelming, daunting, confusing or uncomfortable.

“Instead of looking at a child who is behaving in a difficult way and saying: ‘well, you know, that’s what autism is, they’re injuring themselves or they’re having a tantrum’, he asks: ‘what is the impetus for that behaviour in the environment’? So, for example, if you’re a neurotypical teacher, you may well not notice the buzzing of the fluorescent lights in the ceiling, or the clothes that the child is wearing. And this is key, instead of thinking of pathological versus normal behaviour, we need to think of all behaviours as human and then look at ways to remediate the discomfort/the annoyance/the problem in the environment. If we do this effectively, then we will get a much clearer idea of what we really need to do to help the child.

“We also need to encourage mentorship opportunities for people on the spectrum. Wherever possible, consult with autistic adults/bring autistic adults in to speak to younger autistic people and promote relationships between older and younger people on the spectrum. Why is this so important? Because neurotypical adults will never really understand what an autistic child is going through – even if they’ve taken a million hours of psych classes. It will not only enable an autistic child to see what works in an autistic adult’s life but also allow them to see that an autistic adult can enjoy as successful, happy and creative a life as a neurotypical adult. And that is so important because, for so long, autism was thought of as this ‘childhood disorder’ and, as such, young autistic people had no role models and they need role models like we all do. So, encourage mentorship opportunities for young autistic people with older autistic people whenever possible.

“Finally, anyone who works with autistic children should read the writings of autistic adults. For instance, there’s another new book that’s just come out called: The Real Experts, which was written by a very wonderful group of autistic adults and it’s inspiring writing without being fake. These people have been there, they’ve had their struggles with autism, have encountered inappropriate therapies along the way, and have come out the other side. I would therefore strongly encourage anyone on the frontline of autism practice to read the writings of autistic adults.”

Quotes from Neurotribes

“By autistic standards, the “normal” brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space.”

“Asperger survived the war, but his concept of autism as a broad and inclusive spectrum (a “continuum,” his diagnostician Georg Frankl called it) that was “not at all rare” was buried with the ashes of his clinic and the unspeakable memories of that dark time, along with his case records. A very different conception of autism took its place.”

“While the psychiatric establishment was debating theories of toxic parenting and childhood psychosis, however, Asperger’s lost tribe was putting its autistic intelligence to work by building the foundations of a society better suited to its needs and interests. Like Henry Cavendish, they refused to accept their circumstances as given. By coming up with ways of socializing on their own terms, they sketched out a blueprint for the modern networked world.”

Quotes from our conversation with Steve

“Autism is not just a diagnosis anymore – the genie is out of the bottle. Now it’s a tribal identity… The spectrum enabled the creation of this culture that, in a sense, escaped into the wild and autistic people no longer have to look to clinicians to define their own lives. They can define their own lives with their peers.”

“It’s imperative that we make the world a better and more accessible place for disabled people – not only those with autism but those with any form of disability. Because, when we do this and tackle things with this mindset, ultimately we tend to ensure a better quality of life for everyone.”

3. A reader’s question: There’s been a move over the past five years or more towards talking about ‘autisms’ rather than ‘autism’. Have we reached a point where we can abandon the notion of finding a cause for autism and accept that the heterogeneity of autism is most likely rooted in diverse causation – giving rise to the individual presentation of characteristics that fall within the broad phenotype? In other words, is there any value in pursuing causation research?

“I think that that’s a very good question. Many researchers that I speak to talk about ‘the autisms’ and I think that it’s very clear that what we call autism is a broad social construct – sometimes too broad. As such, autism is an umbrella term for a heterogeneous muddle of conditions with distinct etiologies. What’s particularly interesting here is that we like to pretend that this is a new thing – a 21st century insight – but even Kanner understood this. He knew that autism was a convenient label and he used to talk about the fact that there was a condition called ‘the fevers’. It wasn’t until we started to break the fevers down into a set of disparate conditions that we could really look for the cause and think about therapies.

“We will be able to study causation more effectively when the distinct phenotypes within autism are more clearly drawn. So, at the level of research, I think that this is true. I would suggest, however, that the concept of the spectrum is still very useful socially and for some reasons that are not immediately apparent. For instance, it’s common for parents’ organisations to point to people like Temple Grandin and say that Temple Grandin is simply not the same as their children. They say that their children have really severe autism and that Temple Grandin did not. Well, this is not correct, for Temple did many things that would have been identified as severely autistic. She was kicked out of a bunch of schools, was very rebellious, and was prone to meltdowns because no one understood about sensory sensitivities and autism. She even threw her poo against the wall and so on – which is something that parents often talk about as a symptom of severe autism in their own children.

“The thing is, conceptually, the spectrum is, by its very definition, designed to accommodate each and every autistic person as they grow and develop. This is because people do not necessarily end up in the same place as they move through their lives. Autistic people (like non-autistic people) grow and mature and develop and acquire new skills, even if they do it in a distinctively autistic way, that do not parallel the milestones of neurotypical development. In this way, the spectrum idea accommodates change.

“But there’s another insight that is really only emerging now in the writings of autistic self-advocates. Which is that kids (who are very profoundly impaired/non-verbal), can often relate to verbal autistic adults in a really profound way. I have seen this happen with my own eyes. It’s as if people across the spectrum are on some frequency that they can pick up on. My friend John Robison, who is autistic and the author of a great autobiography called Look Me in the Eye, has said that it’s like dogs recognising other dogs. They can relate to one another and understand each other’s reactions.

“Indeed, one of the things that I’ve changed my mind about over the years is that I used to think that autistic people had a hard time parsing subtle social signals (like body language and facial expressions). Of late, however, I’ve come to realise that autistic people can often read each other in ways that non-autistic people can’t and that doesn’t depend on everybody being on the same functioning level. Because, as one autistic mother said to me – and this is something that many autistic people recognise and those who work with autistic people understand – ‘some days are more autistic than others’. And so, while the idea of the spectrum is undoubtedly useful socially, on the microbiological level it probably occludes rather more than it reveals.”

4. A reader’s question: In your research, have you found any significant differences between genders in terms of characteristic autistic traits?

“Oh, absolutely, I think that we’re in a very primitive era in the understanding of what autism looks like in women. And that’s because autistic women have been almost completely overlooked for decades. Asperger acknowledged that they might exist and was smart enough to recognise his own limitations. Kanner did write about girls who were autistic but, for some reason – probably due to sexism – his writing in this area hasn’t gotten the same attention as his writings on boys. It’s partly because many autistic people initially come to the attention of the authorities (teachers, police, etc.) because they behave in an aggressive manner. And, more generally, I think that women, historically, have been socialised to be non-aggressive, to fade demurely into the background, and to script their remarks to fit in. In contrast, boys have typically been rewarded for being outrageous, insensitive and tough.

“This socialisation fault line has tended to conceal the true extent of autism among women. An oft-cited statistic is that there are four times as many autistic men than women. The reasons for this are disputed and the fact that there is genetic research going on into what is termed the ‘female protective factor’ reflects the different schools of thought. Whatever the cause, what is most striking is that I don’t think that we’re even close to estimating the true extent of autism in women. For example, many of the most compelling self-advocate authors are women and they’re bringing their experience to light in a way that will make it easier for us to understand what autism is like in women and I think that’s a very good thing.

“And many of the leaders of the Autistic Self Advocacy Network – the most prominent self-advocacy organisation for autistic people in the US – are women. And some are also people of colour, which is also another good thing, because, I think we don’t really understand the extent of autism in minority communities and that’s because minority communities – particularly in America – have traditionally had very limited access to healthcare.”

5. A reader’s question: Asperger wrote very rich case studies on the boys who he worked with. Is this approach valuable in supporting personalisation in education?

“The thing about Asperger and Kanner is that they were both excellent writers. I don’t speak German, so I wasn’t able to read Asperger’s paper in its original language. But what’s so interesting is that both Asperger and Kanner had training in the arts. Asperger loved poetry as a young man and would read poems to the children in his clinic at the University of Vienna. While Kanner started out wanting to be a poet, to his mind, he had been side-lined into medicine. In fact, so much so, that at one point he said that if his poetry had been better, he would have been killed in the Holocaust because he would have stayed in Eastern Europe.

“Ultimately, what’s particularly striking about both of their case histories is that they were able to communicate a pattern to their colleagues so easily, which is a wonderful advantage when autism is very much defined by a constellation of behaviours that vary so widely. And you know, I do believe that case histories – as many as possible really – are one of the best ways to make that pattern known. Obviously, if we ever come up with a biomarker for autism, you know, that will probably supersede case histories, because that’s the direction that medicine is moving in – towards so called big data.

“Oliver Sacks, who I knew and who wrote the introduction to my book, was a big believer in case histories. Why? Because they allowed the clinician to not just talk about the disease/syndrome that the person had, but to give a sense of the patient’s life, what they were struggling with, what they were trying to achieve, and the changes in their life circumstances that they had to make to cope with the limitations imposed by the syndrome.

“More particularly, Asperger’s case histories were a bit more compassionate than Kanner’s. Kanner tended to see the shadow of psychopathology even in behaviours that we now know are actually the special gifts of autistic people. For instance, he talked about the fact that one of his patients was able to identify 18 symphonies when he was not even three after hearing just a couple of bars. But, whereas Asperger would have thought that that was a very interesting aspect of what he called ‘autistic intelligence’, Kanner’s view was that these children were desperate to impress their yuppie parents. In short, Kanner had a way of casting everything in a negative light and Asperger did not do that. So, you know, I think that case histories are still very valid, even if we eventually come out with a biomarker.

“In the last six years of writing this book, I’ve lost count of the number of times that I’ve heard of the urgent, groundbreaking discovery of a biomarker for autism. And then it turns out to be ‘too much white matter’; or ‘too little white matter’; or ‘too much GABA’ [the neurotransmitter gamma-aminobutyric acid]. So, the story comes out and the media runs with: ‘Biomarker discovered for autism’. Then six months later, the completely opposite set of data comes out as distinctive for autism. And that’s because of a habit that researchers have. If they study the brain of an autistic person and they notice differences between their brain and the neurotypical brain, then that immediately evidences pathology and, you know, we’ve really got to strive against this insidious legacy in our research designs.”

6. The case studies that you highlight in your book, not only perfectly place the human dimension, but, as importantly, emphasise the fact that the issue of diagnosis itself is so political. So, for example, some children need to be labelled with a disorder to receive the education/other services that will enable them to thrive. Do you feel that autism can move out of this political dilemma and reclaim its own language in the future?

“Autism is not just a diagnosis anymore – the genie is out of the bottle. Now, it’s a tribal identity. Autistic people encourage one another by sharing their own stories and informing science. However, this wasn’t always the case. For instance, it wasn’t until Temple Grandin started talking about how uncomfortable her dress was in church on Sundays, that scientists even started thinking about sensory sensitivity in autism. And so, on balance, I think that the emergence of autistic culture is probably the most significant development in autism in the last 25 years since the expansion of the spectrum. And, of course, it couldn’t have happened without the expansion of the spectrum.

“The spectrum enabled the creation of this culture that, in a sense, escaped into the wild and autistic people no longer have to look to clinicians to define their own lives. They can define their own lives with their peers. And so, that’s an interesting thing, because I think that it’s very important that the future of research and intervention is informed by what self-advocates say that autistic people truly need. That’s parallel to, in a sense, how the parent movement started to inform research, although the parent movement unfortunately, very tragically, got diverted by the vaccine hoax.

“But, you know, we’re all evolving together as a society and I think that the emergence of autistic culture poses some very interesting challenges to the political dimensions of the diagnosis, but will also show us the way forward.”

7. A reader’s question: Your book is in memory of the English psychiatrist Lorna Wing. You’re a great advocate of her work, what are the key messages from her legacy?

“Lorna was the mother of the autism spectrum. She broadened the diagnosis so that more autistic people and families like hers could get the help that they were so desperate for. She was the ideal person to relay this message because, as a clinician, researcher and mother of an autistic daughter (Susie), she instinctively knew that Leo Kanner’s theory of refrigerator parenting was ‘bloody stupid’, as she told me. What’s particularly interesting is that, although Susie would have been eligible for a diagnosis under Leo Kanner’s very strict criteria, Lorna’s networking with other parents of autistic children meant that her understanding of its prevalence was much broader than Leo Kanner’s proposition. This realisation preceded her seminal Camberwell study, a publication that would clarify the autism spectrum in her mind.

“Her unique personal/professional experience meant that she also knew that autistic children became autistic teenagers who transitioned to autistic adults without any influence from so called refrigerator parenting. This realisation, at that moment in time, placed England 30 years ahead of America. In sharp contrast, in the US, people called Ed Ritvo ‘crazy’ when he started to look for biomarkers for autism at UCLA.

“Lorna’s clarity was fuelled by Hans Asperger’s 1944 paper. When I met her, Lorna told me that she and Judith [Gould] (her assistant) noticed a broad and colourful range of people with autistic traits when they put the Camberwell study together and that she didn’t really know what to make of it all until she saw reference to a paper by Hans Asperger – who nobody had ever heard of because Leo Kanner had never mentioned him. So, seizing this, she asked her husband John (a very impressive researcher in the field of schizophrenia) to translate it because he spoke German. At that point, a light bulb went off in her head.

“And so, when all’s said and done, Lorna was decades ahead of almost everybody else. She worked patiently and diligently over many years to broaden the diagnostic criteria in the ICD and the DSM [key psychiatric diagnostic systems]. Through this, she made it possible for society to move forward and recognise that autistic people not only have what she called the triad of impairments, but also very special gifts that they could offer to society. This, in essence, was the remarkable truth of Lorna’s legacy.”

8. What do you feel the future holds for those with autism? Have we reached a sustainable point or is there the danger of some sort of regression?

“Well, I think that there is a danger of regression. And, unfortunately, you know, American politics couldn’t look worse. On the one hand, you have Donald Trump still babbling about vaccines in 2015 and, on the other, you have Hillary Clinton’s progressive autism plan.

When Hillary announced her autism plan a couple of weeks ago, I was really impressed with her proposition to carry out the first study of autism prevalence in the US. In this day and age, it is absolutely appalling that, after 15 years of yelling about vaccines and autism epidemics, we have never actually sat down to figure out whether there is a true rise in prevalence. Of course, Terry Brugha did that in the UK in 2011 and discovered that autism is just as prevalent among older people as it is among children. And this fact, in itself, may well suggest that there has been no rise whatsoever. But it really does need to be investigated in the US and, for that reason, Hillary’s announcement is welcome, though some autistic self-advocates are unhappy with her plan because it includes more funding for ABA [Applied Behaviour Analysis] and many autistic people have terrible memories of ABA.

“Autism parenting organisations (even those that didn’t believe that vaccines were responsible) grabbed on to the notion of an epidemic because autism had been overlooked for so long. And there’s nothing like the word ‘epidemic’ to get you into the headlines. But I think that was a deal with the devil, because it rendered autistic adults, who had been invisible for decades, even more invisible.

“It’s imperative that we make the world a better and more accessible place for disabled people – not only those with autism but those with any form of disability. Because, when we do this and tackle things with this mindset, ultimately we tend to ensure a better quality of life for everyone. Let me give you a couple of very humble but pervasive examples.

“First, consider the ‘kerb cuts’ that enable wheelchair users to ride from roads onto sidewalks smoothly without having to jump over a kerb. Kerb cuts were originally created for wheelchair users, but now every parent with a baby stroller is thankful for them. Why? Because they can roll their stroller down the street without having to hitch it up to reach a kerb in the sidewalk. Secondly, what about closed captioning? Originally, it was invented for people who are hard of hearing. Now everybody reads their news on the treadmill at the gym.

“So, accommodations for disability tend to improve the quality of life for everyone and we’re only just beginning to think in terms of accommodations for cognitive disabilities. Thirty years ago you would have called a young person who communicated with their friends primarily by typing: disabled. Now, it’s every teenager with texting. In short, when we make real provision for disabled people, we will also improve the quality of life for everyone along the way. With this in mind, I’m really hoping that this is the future direction that our society is heading in.”

About Steve Silberman

Steve Silberman is an award-winning investigative reporter and has covered science and cultural affairs for Wired and other national magazines for more than 20 years. His writing has appeared in the New YorkerTIMENature and Salon. He lives in San Francisco.

Buy Steve’s book and read more of his writing at stevesilberman.com

A Q&A with Dr Sue Sheppard on autism, training and Lorna Wing

1. In April of this year, we celebrated Autism Awareness Month. In anticipation, we spoke to Steve Silberman in our previous issue and interviewed Temple Grandin for this one. In Steve’s piece, he spoke warmly of Lorna Wing, who you’ve worked closely with. What’s your experience of working with Lorna and why has she been so important to autism?

“I worked with and knew Lorna for approximately 20 years and she was an amazing mentor, role model and friend. One of the most interesting things about Lorna was that many of her original ideas have evolved over the years and are still current, so her really great foresights and insights meant that she was several steps ahead of the pack. When she sadly passed away, the countless eulogies and obituaries quoted research that had been published more recently and remarked on the fact that Lorna had reached many of the same conclusions ten or even 20 years ago. In many ways, she was quite the visionary.

“She had this forensic, scientific ability to get to the heart of the matter and was also the mother of a daughter with autism. This background gave her a unique voice and perspective; enabling her to combine rigorous and scientific discipline with an empathic view of what caring for a child with autism really meant. And some of her most important observations about the early identification of children with autism – such as a child not pointing or not joint referencing – came directly from this confluence. She could remember watching her young daughter on the train with a little girl of a similar age and noticing her behaviour was just so different.

“So, whilst the fuel for her observations was her experience as a parent, her scientific background very much drove her questions. At her funeral, I was asked to deliver a eulogy and I used one quote in particular which sticks in my mind: ‘[that] the important thing is not to stop questioning, [for] curiosity has its own reason for existing’. This, I think, very much reflects Lorna, someone who constantly asked questions. She never claimed to be an expert and she was very humble, but she was absolutely committed to autism and listened to everybody. She was also extremely generous with her time. If young researchers asked her questions, she would always find a moment to give them some guidance.

“I think that the other aspects of her legacy that people are familiar with are the triad of impairments (which she developed alongside Judith Gould), the wider notion of an autism spectrum and the development of the DISCO diagnostic tool, which now is internationally recognised and recommended as a ‘gold standard’ tool in the NICE guidelines. In essence, through her questions and her legacy, Lorna reminds us that there is still an awful lot that we don’t know about autism.”

2. In March of this year, two autism charities wrote a letter to The Guardian. They called for all teachers in England to be trained in autism, claiming that, without this, children with autism risked being misunderstood and marginalised. Following this, the World Health Organisation (WHO) recently reported that global access to services and support for people with autism is inadequate. What are your thoughts on this and do you recognise these concerns?

“Yes, to some extent, I recognise the concerns, but before I reflect on them, I think that it’s important to highlight the fact that there are many examples of very good practice currently evidenced in schools. I’m working in a broad range of schools right across the age range (including post-16) and have seen some excellent practice. Training is one aspect that does need to be in place, but it’s really important to get the training right, because I do have some concerns that people think that if you do lots of autism awareness training then everybody will know what to do. This is not the case, because autism is so complicated. On balance, I think that you need different levels of training to ensure that people can really see what maps onto their individual context. It’s just not as simple as sending everybody away on a training course to make things much better. No, it’s more about thinking about levels of training for key workers and training that’s tailored to individual settings.

“In regard to WHO’s assessment, that global access to services and support are inadequate, I have certain concerns about the dearth of specialist posts in this country. For example, when I carried out some early research in 1999, around half of the local authorities had specialist educational psychologists for autism. Now, I know that a lot of these posts have gone. I suspect that if I repeated that research exercise now, it would reveal a significant decrease in the number of specialist posts. So, I do recognise the concerns, but I also want to balance this against the fact that an awful lot of training has been developed by organisations such as the Autism Education Trust and the National Autistic Society, amongst others. There’s also a lot of online training available that is easily accessible and some that doesn’t even have to be paid for. So, given this situation, I would suggest that it’s about encouraging people to access the many types of training options that are out there – whether free, online or bespoke.”

3. As a hugely experienced and widely respected specialist EP, and our module leader for Autism Spectrum Conditions, how do you feel good training can help stop those with autism being misunderstood and marginalised? How can we narrow the gap?

“I think that good training has to be holistic and I feel that we really need to look at a range of dimensions. In the autism field right now, a lot of people talk about dimensional approaches, learning styles and sensory needs; and there is also a lot of awareness around girls and women with autism. And I think that some of these newer interest areas are the ones where gaps in training exist. Also, I have some real worries about the fact that schools are under incredible pressure to work with data and measure outcomes. I acknowledge that it is important for them to do this. However, I am also concerned that children and young people on the autism spectrum require quite a lot of intensive working as regards the social curriculum. And if schools are being pushed to focus on academic outcomes, then it greatly concerns me that the holistic aspects may be lost in the wake of such a narrow focus.

“Simply put, schools have got to work out ways to demonstrate progress across the range of dimensions, so that they can demonstrate real outcomes that are not narrowly defined. Because, ultimately, good training is training that not only promotes flexible personalised programmes and in-depth profiling, but also listens to the voices of young people and their parents – all of which is completely in line with the current SEND Code of Practice.”

4. How do our MEd SEND Programme Autism Spectrum Conditions modules equip SEND practitioners and teachers to ensure that those with autism are not being left behind?

“The MEd SEND modules have a very reflective practitioner stance and this is key. We do, of course, encourage our delegates to increase their knowledge by examining the history and the evolution of the autism spectrum and it’s important to see how it has changed and its implications for practice. However, what we’re really promoting in these modules is action research. The action research helps delegates examine individual case studies and asks them to carry out their own research into auditing and profiling and link this to what they have done themselves in terms of interventions. This is empowering work that moves beyond simply absorbing and increasing their knowledge, because when they have completed these modules, they can actually think about the application within their individual context and introduce new ideas and interventions based on their personal research.

“And I’ve been incredibly impressed with some of the work that my delegates have carried out both within the UK and internationally. I’ve worked with delegates who have started at such a low baseline, in terms of their specific autism provision for students, and have drawn up quite advanced, complex school development plans that have shifted things in a really significant way. So, through these modules, I think that delegates will find that they can really apply what they learn, rather than simply being passive learners.”

5. What does the future of autism look like in our schools?

“The next few years are going to be really interesting, because our schools have been much more inclusive in recent times. I’m pleased to see that young people in schools are much more used to learning alongside children with autism than they have been in the past. There’s also been so much autism coverage in the media that the younger generation are much more knowledgeable. You can talk to teenagers about autism and many of them can tell you an awful lot – which certainly wasn’t the case when you or I were at school. So, I think that the legacy of our inclusive system is strong and will shape future generations.

“I’m also very interested in the fact that universities and employers are now actively recognising the strengths of learners with autism spectrum conditions and I know that Steve Silberman picked up on this theme in his recent book. Ultimately, though, schools need to collaborate with FE, HE and employers to identify how we maximise these strengths to ensure that there are real opportunities. This runs hand in hand with the fact that there are employers actively recruiting individuals with Asperger’s syndrome, particularly in computing and engineering.

“There are many positive things emerging, but austerity means that schools are struggling with budgets. This concerns me, because of the impact that it will have on specialist services. Of course, other areas that schools need to look at very carefully revolve around girls and women. More particularly, we need to really look at those complex cases where girls are being wrongly diagnosed/not being diagnosed and are ending up in psychiatric provisions. This should not be happening in this day and age and we must strive to understand it better.

“I am reassured by the fact that many of the practitioners who attend the DISCO diagnostic training now actively choose complex training cases that focus on girls and women. We are also getting a lot more enquiries about people who want to increase their knowledge around identifying girls who perhaps still aren’t being understood. We live in a time of change. We’ve accepted the notion of the spectrum, we speak of ‘autisms’ and yet we don’t really know what autism is. Now, we simply need to carry on learning, encourage schools to be flexible, take individualised approaches and not look for a simple package or an easy solution; because, if it was simple, then we wouldn’t still be struggling with some of the work that we do.”

About Dr Sue Sheppard

Sue is a senior specialist educational psychologist (EP) who is a consultant to the Lorna Wing Centre for Autism (part of the National Autistic Society). She has been a specialist ASD advisor/EP for a number of London boroughs for over 20 years and has also worked as a specialist teacher. Sue has been instrumental in setting up provision for children and young people with ASD across early years, primary and secondary and has an eclectic career portfolio covering lecturing, training, consultancy and diagnosis and assessment. She is a specialist speaker in autism for EPs in training at University College London and has worked in collaboration with other universities – her doctoral research focused on autism outreach services.

 

Sue has significant experience of supporting learners online and has been a module leader on a number of ‘special needs’ programmes for various universities. Sue works with Real Psychology to provide extensive specialist EP services across London. She is also the module leader for Real Training’s Autism Spectrum Conditions: Skills & Knowledge (S&K) and Application & Reflection (A&R) modules, which are part of Real Training’s MEd SEND Programme.

Find out more about the Autism Spectrum Conditions: S&K and A&R modules.

If you have any questions, or there is anything that you would like us to feature in future issues, please do get in touch.

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