Autism in the Workplace - Mental Health Discussion with Dr. Bailey
Autism in the Workplace - Mental Health Discussion with Dr. Bailey
(Mahin Rashid) For today, this afternoon we have, it’s my pleasure to introduce Dr. Bailey. And Dr. Bailey, for those of you who are not familiar with him yet, does a great presentation on mental health in the workplace, and so it’s a treat for us to have you here. Dr. Bailey is a professor and the chair of Child and Adolescent Psychiatry at the Department of Psychiatry and the Faculty of Medicine at UBC. Does that all fit on your business card (laughs)?
He is a leading researcher of the neurological biases of autism and does some clinical work with teenagers and adults with autism. He’s also the founding Editor-in-Chief of Autism Research: The Journal of the International Society of Autism Research. So Dr. Bailey, thank you very much and we’re so excited to hear what you have to say.
(Dr. Bailey) Thank you.
So I’ve been given strict instructions not to wander outside this circle.
So a bit like a British pantomime and if I start to drift, should probably shout out behind you or something like that. It’s very nice to see so many employers here today, along with a few other
people in this room. I organized a conference on autism in employment about four years ago, which was the families and service organizations. We didn’t invite employers at that time, because we felt we weren’t ready for you.
And in fact, if we’ve been in this room 20 years ago, the topic of autism in employment simply wouldn’t have come up. It’s a situation that has evolved really, I think, over the last 10 or 15 years in part because of the data that David was showing you, the realization that many people with an autism spectrum disorder have average or above-average levels of intelligence that they should be working that many are capable of doing very senior jobs, and so the whole field has changed from the idea that people’s being sheltered employment in assignments to thinking really the vast majority of people on the spectrum should be in work.
And when I am not researching or teaching, I’m diagnosing and managing able individuals or adults with ASD. And my work really focuses on two things. One is managing anxiety because this is a huge problem to most adults with ASD and the other is trying to help people get into employment. And when I used to be in the UK, we’re slightly more blunt there than you polite Canadians, and so if I would ask one of my young men what he wanted, he would nearly always say a girlfriend, a car, a house and a job which is what we all want, except changing the gender of the first thing. And I was always forced to point out that yep, that was a good list, but actually you needed to reverse it.
No self-respecting young lady wants to go after the man who doesn’t has a job and a car. And one of my great disappointments over the last few years is being that it doesn’t seem to matter how hard I try, or what I do, or how many meetings I go to at WorkBC, the vast majority of my patients are still not in work. And I was at a meeting last week with Vancouver Coastal Health Authority that had been called by some of the organizations in this room, because adults with ASD are commonly turned away from mental health services. And the reason they’re usually given is either “we don’t see people with autism,” or “we don’t know anything about autism.”
I think the real reason people are turned away, is because the professionals are anxious that they don’t have the skills to deal with these individuals, which I know is not true. Skills that psychiatrists and psychologists have in dealing with every other type of condition are equally applicable to people with ASD.
And one of the things I’d like you to take away from this is that the skills that you already have for dealing with employees are really all you need to deal with employees with ASD. Minor tweaks here and there, but not going back to school and reading a new textbook, it’s not that sort of issue.
I’m actually going to spend the smallest part of this talk talking about mental health issues in autism in part, because I’m anxious, if you have a whole hour on this topic, you’re going to go away thinking this is a big, big, big, big deal and it’s not. And it needs to be put in the context of what we know about mental health in the workplace more generally and ASD and employment.
So, you have all sorts of reports and documents in Canada which you will know back-to-front. So I thought I’d put up an English report just because you won’t have seen it before. So the British Prime Minister last year, asked Lord Stevenson and Paul Farmer to prepare a report on mental health in the workplace in the UK. Because there was a realization that mental ill-health, cost employers and the government a huge amount of money.
And I very much like this quote, particularly the bit, it says mental health is something we all have and we fluctuate between thriving, struggling and being ill and possibly off work. In other words, mental ill-health isn’t something that happens to other people. It happens to everybody. There’s some data suggests that most 1/2 of the people in this room will probably have a serious episode of depression once in their life.
So these are a very common disorders and also the report is pointing out that really, when we’re thinking about mental health in the workplace, we need to take about two groups of people. One is people with very serious mental health issues and we might want to include some people with ASD in that category who by and large have difficulties getting into work. So a lot of unemployed people who’ve never had jobs because of their mental health issues. And there’s everybody else who’s in work, but who might develop a mental health issue whilst at that work.
And the literature really sort of bifurcates in terms of feeling of these two groups. And I’m particularly going to focus on the issues that are relevant to people in the workplace already, because that seems relevant to what we’re talking about. And one of the reasons I’m so passionate about getting people I see into work, is work is good for us. It’s good for everybody, but it’s particularly good for people with ASD, because work provides predictable daily structure.
And predictable structure is very good for bringing down anxiety.
And so I often find that my patients, their mental health improves considerably once they’re in a job that’s well within their capacity to do and they start to thrive. And, of course, it’s either a vicious circle or a virtuous circle. If you applied for jobs and never get any, your mental health deteriorates. If you get one, your mental health improves.
So being in work is a very good thing, not just for people with ASD, because being in work seems to be protective against both depression and suicide. And you probably know that if
you’re chronically unemployed, your life expectancy is decreased really quite significantly by a considerable number of years, and the likelihood of you developing all sorts of physical illnesses increases dramatically. And when we’re thinking about employment and disabilities, sometimes we don’t really realize what’s going on.
So in the UK, there are three million people who are registered as disabled but are in work. And that number is greater than the number of people who are off work and claiming incapacity benefit. So there is not a one-to-one relationship between disability and unemployment; in fact, quite the opposite. Most people with disabilities are working. And the commonest reason for people being off sick long-term, not physical illness, it’s psychiatric disorder.
And across the OECD countries, psychiatric disorder accounts for about a ⅓ of all disability payments and makes up 3/4 of long-term absences because of ill-health. And many of you will probably realize that there’s often in these people who are sick long-term, in a sort of noxious combination of a physical problem whose effects are amplified by a comorbid mental health issue.
But because of changes in our attitude towards people with mental ill-health and disability, we now have many more people with mental health issues in the workforce than ever before. But Stevenson and Farmer commissioned some research and from their findings, they extrapolated to the conclusion that about 300,000 people per year in the UK, lose a job in relationship
to mental ill-health. And that that is a much higher proportion of people than lose jobs because of physical ill-health. And it’s twice the rate of people who are healthy.
So having a mental health condition makes it hard to get into work and increases the risk that if you are in work that you’ll drop out. And if we just look, not a people with a recognized mental health disorder, but the population in general, then 15 to 20% of people in the UK will report symptoms of a mental health condition which is identical to the Canadian data.
The number you are told here is the one in five people will have some sort of mental health issue. Now, a lot of the costs are easily identified because of people being off. I mean that’s an easy thing to estimate, but a significant proportion of the costs are due to what’s called “presenteeism.” So this is people being at work but underperforming because of a mental health issue, or indeed a physical condition. And this actually accounts for a huge amount in terms of low productivity.
It’s the final bullet that’s the most important one. So employers in the UK are under the assumption that they have this completely healthy workforce. There’s no one’s ever saying, “oh by the way, I’m anxious or I’m depressed, or something awful is happening in my life outside of work and I’m having trouble coping.”
And this is to do with stigma.
The people are still very reluctant to admit to having any sort of mental health condition because they have something wrong with our heart, or our pancreas, we’re not morally responsible for it. Well, maybe with the pancreas if we drunk too much, let’s take the kidney. By and large we don’t think about physical ill-health in the same way that we think about mental ill-health. We feel more personal responsibility when we’re showing problems that we believe potentially were under our control. And that’s why the employers are not hearing about these conditions.
And so there has been a lot of research into what are the aspects of the typical workplace
that might predispose people to mental ill-health. There’s not a huge agreement on how much weight should be attributed to each of these components, but most of the studies point to these factors as common ones.
So if you work crazy hours, you know you’re on shifts we’ve known forever that that is not very good for your mental health, equally it’s not terribly good for physical health as there’s a lot of data suggesting that shift work reduces life expectancy. If job demands are too high, that is very bad for people, or if the amount of effort is disproportionate the reward you’re getting either monetary or self esteem, That doesn’t seem to be good for people. If the job just seems fundamentally unfair in the way it’s divvied up between different people that seems to be stressful. If there’s lack of social support at work, if you’re working in isolation, never meet any of your colleagues, that’s not good for you. If you feel you have very little control over your job,
or can’t control the rate that you have to perform tasks — So this would apply particularly to production line workers that’s stressful in its own right. If you don’t know whether you’ve got a secure job that is also stressful.And this is becoming a big worry, as the nature of work is changing more people are becoming self employed and working numerous part-time jobs. The role of your job itself might induce stress.
Most employees dislike change at work, because they’re pretty sure that the change means change for the worse, not change for the better. And bullying, despite lord knows how many guidelines and demonstrations there is still a problem and the mores clamped down on the more sort of subterranean and subtle.Yes, humans are very good at finding ways of getting other people. And hopefully, without me hammering it home, you can see that these are all issues that might equally apply to someone with ASD in the workplace. They are factors that affect all of us. And so, when we’re thinking about people with ASD in the workplace, we not only have to think of all the ASD-specific things that David was talking about this morning, we have to think about this broader range of factors that influence how everybody does their work and how they feel about the work and how they’re coping. And, of course, not all ill-health at work is caused by work. The problem might lie in other part of our lives.
Our marriage might be in trouble. We might be worried about our children. The mortgage might be about to go down the drain. But by and large there is an acceptance that there are aspects of work that can impact negatively on people’s health.
So, Stevenson and Farmer made these recommendations, which I think are pretty close to the ones we have here and some of these were more important for bigger employers rather than small employers, but they thought it was important that every organization had a mental-health-at-work plan.
It’s not the same as saying the employer is somehow going to treat mental health conditions, it’s that employers after managers have to be aware of some of the factors I’ve alluded to and think through other ways of mitigating risk in their organization.
Secondly, that employers, just like professionals and the media and NCOs, have a role in talking back mental health and destigmatizing it. The more we talk about it, the less it seems an untouchable topic. And that this should be carried through into very open conversations with employees. That doesn’t mean a blunt conversation, but that managers, in my experience, will often find it easier to talk about physical illness than they will about stressful anxiety.
And the rest are very straightforward and I think probably uncontentious. Now, we can think about costs in relationship to ASD in employment into place. So most of the costs associated with ASD are incurred in adult life. They’re not incurred in childhood. And that’s for several reasons. One is we spend much longer as adults than we do as children, but it’s also because
nearly 1/2 of the costs come from this very high rates of unemployment. This is a double hit for government, so there’s a direct cost in terms of paying any sort of disability pension and then there’s an indirect cost in terms of income taxes that are not collected from someone who is working.
So a so-called shadow cost. And there’s actually very little variation between developed countries in terms of the rate of employment. So David’s figure, I think, was identical to the one I’m showing here for Canada. In Canada, 65% of adults with ASD have no work at all. In the UK, the rate of employment at 16% has gone up 1% in the last 10 years, and 1% is within the margin of error. In other words, it just hasn’t changed, despite a huge amount of effort to persuade employers and mental health professionals and the like, that they should be doing
more to get people in to work.
The other type of cost we need to think about which I’m not going to show any slides on is, is it financially beneficial to employers to recruit people with ASD or other sorts of disabilities? And here the limited amount of data is overwhelmingly yes. David’s already shown you data indicating that work performance within sort of measurement error is pretty indistinguishable
from anybody else, but why it’s advantageous to employers is because turnover of staff with ASD, well, indeed many other disabilities is much lower than typical turnover. People are grateful to have a job and they want to keep it.
That means they’re not looking for the next supposedly better job after six or nine months. And Karen Bob was reminding me, where is Karen? at lunchtime that there’s a Tim Hortons franchise on the eastern coast of Canada, it’s always in the newspaper for employing people with disabilities because cost some astronomical amount to teach someone how to pour a safe cup of coffee, and if that person leaves after six months, the owner of the franchise is losing a lot of money. So employees who stay make financial good sense. If they also don’t sleep with your PA, or fiddle the books or phone in sick when they’re not sick, that’s a bonus.
So, the problems with employment are not specific to employment, so if we just go back one step to people who are in higher education, they’re facing similar difficulties to an employee in a work situation. So, it doesn’t matter which country you look at, people with ASD have lower rates of university enrollment than others lower rates of graduation. And even when they get a degree, their employment rates are ⅓ that of the typically developing population.
Now that’s a big waste of money. In educating someone to degree-standard, is not entirely covered by tuition fees. I mean, when we do our taxes so you’re all paying for me. And so it doesn’t matter where we look, we’re losing money very badly. And a lot of the reason why people are not doing well in higher education is actually very similar to some of the challenges that David pointed out in the workplace. So, either last year or the year before, we published a paper where we reviewed all the literature on ASD and employment. And I did this with a couple of occupational therapists who know about I’m an amateur at employment. But occupational therapists know about employment.
So they sort of forced the literature into their best model, which really dealt with barriers to employment under three headings of individuals themselves, the environment they were in and the type of job that the person was trying to do and what they picked up was, as David was pointing out, sometimes some individuals who are unaware of personal hygiene, they may be very poor taking care of their own physical health. Lots of individuals with ASD will have high pain tolerance or less awareness of bodily function than other people so often they will let an illness sort of fester for too long and then something that could have been relatively easily sorted out becomes a big deal. And a particular challenge in many areas of life is problems with executive functioning.
So executive functions are skills like planning, time organization, motivation, remembering to do things in the future, prioritizing, self-monitoring and correcting errors.
And we see that even in extremely able individuals with ASD with measured IQ higher than any of us in this room, some of those areas of cognitive function can still be problematic. And I particularly want to draw your attention to low self-esteem because overcoming anxiety in the workplace, is part of sort of talking yourself on.
It’s that little chat we have to ourselves (chuckles) constantly, like I hate doing this or I don’t want to do it, or I’m scared of doing it, but boy I’ve still got to do it, because what would my mum think of me, if she knew I bailed out. And so low self-esteem has some pervasive negative effect on many individuals with ASD. And then David has already addressed the problems with social interaction and communication.
And actually right at the bottom of our list was comorbid mental health issues. It wasn’t top of the list, it is a factor, but the truth is that individuals with the most severe mental health issues are not at that stage trying to get into employment anyhow. No one is trying to get someone who’s seriously unwell into work. So by and large, when we’re thinking about what employing people with ASD, if they have any mental health issues at all, they’re likely to be mild or modest in severity. So, this is some data gathered in BC through a nationwide questionnaire study about three or four years ago by Jonathan Weiss. And these were questionnaires to families, or to self-advocates asking about mental health issues. And what I want to draw your attention to is this number here.
½ of the adults, whether they were self-responders or a parent was reporting on basically ½ of people the same. They had a significant problem with anxiety. In BC, Community Living BC, which provides support to individuals with intellectual disabilities, but also to adults with ASD with intellectual abilities in the normal range but who are impaired through limited ability to look after themselves. They may be smart, but have trouble doing things in everyday life. CLBC found that a 100% of those people were reporting a significant anxiety disorder.
And if you go to more scientific studies where people like me, have taken of a well-defined population and tried to assess how many adults with ASD have a diagnosable anxiety disorder, the answer usually comes out between 70 and 80%.
So in everyday life, the most common mental health issue, as an employer, you’re going to see from someone with ASD is likely to be anxiety. If they’re extremely anxious, they’re not going to be with you. You can also see that about ⅓ of people have OCD, Obsessive-Compulsive Disorder. And amongst the patients I see, these are usually the most handicapped people, because the OCD almost imprisons them in their home. They’re spending so long in various rituals that there isn’t any hope of holding down a full-time job. But again, not something that would suddenly appear out of the blue in a workplace. And then everything else it is pretty uncommon, except for depression. And often depression will follow on from prolonged anxiety which would happen to any of us. If we’re stressful long enough eventually it has some impact on our mood. The barriers, the literature identifies in terms of the environment, negative attitudes, either by employers or fellow employees, or people are being expected to interact socially at a level they’re not really either comfortable with or capable of or people having trouble making judgments about social interactions.
So, many years ago I had a very smart patient who I think had two PhDs, one from Oxford and one from Cambridge. So, he wasn’t your typical member of the general public. And he worked for a big telecom company. And the outcome of the story is good because eventually the telephone company posted him to New York, which was not because they wanted to get him out of the UK, but maybe because it was a promotion for him because he was so good at his job.
When I saw him, he was getting into trouble for talking to other people too much at work, and he was really perplexed about this because he said “I talk to other people at work far less than anybody else. They all standing by the coffee, jug and the water filter talking all the time, and I just might stop at someone’s desk and talk to them for five minutes and then I’m gone.”
And of course it turned out he had no awareness of whether the person was busy or not,or whether he just gone on for slightly too long, because he was partially sighted as well, which didn’t help. So, he couldn’t pick up on any of the cues. So sometimes it is not just not interacting, it’s knowing when to interact and being able to read other people’s language. And very often we’re quite good at providing a lot of supports when people first start a job. The best games will have intensive job coaching, which has gradually faded out over a period of time. We’re less good at making sure there’s then regular check-in for the next few years, which is not very expensive. It requires phone call to the employer.
Stigma is still a huge issue and sometimes people were just in the wrong physical environment. So you heard from Bailey earlier, about sensory overload working on a busy factory floor. If your noise sensitive, it’s just not, a good fit it’s like asking me to do maths. And then the other issues that came up were that individuals were feeling they weren’t getting enough support in looking for jobs. Job coaching is still very rare. And a very important issue that lots of individuals with ASD will not be able to read between the lines.
So David gave this nice example of moving the staff on the building site, where the individual hadn’t given specific enough instructions. But often we just take it for granted that if we give someone a task to do and they finish it quickly, that they’ll find something else to do. But if you don’t spell that out sometimes to someone with ASD, they might think “oh, I just have to sit here and wait until someone gives me something to do.” And then particularly problematic, and an issue that I think is going to take much longer to sort out than just getting people into work is getting people into careers.
Many of my patients with degrees are in dishwashing jobs. That doesn’t seem to me a good use of their abilities, and it’s not something that we as parents, any of us who are parents, would tolerate for our own offspring. We want them to be reaching the maximum potential they were capable of. But very often there’s an attitude, sort of an unspoken attitude that provided we can get someone a job, that’s good enough. We ticked off that box and that’s fine, but that’s not really what life is about.
We want to see ourselves developing and reaching goals that we’ve set for ourselves, but somehow the bar is put very low for people with disabilities. It’s a different type of bar than the one we use for ourselves. So what we know seems to work in terms of helping people with ASD get into work is volunteer experience ’cause often employers will complain that someone with ASD doesn’t have work skills. Not skills specific to a job, but just knowing to turn up on time, clean and willing to work and not having stayed up all night playing video games. Pre-employment training courses are a good way of quickly teaching people those skills and actually sending people into higher education first buys us some time. It gives people years in which they can learn the skills that are going to be applicable in the workplace without having quite the same pressure, that they would have in a paying job.
And lastly, we’re very used to starting a new job at nine o’clock or eight o’clock on a Monday morning and working our 35 or 40-hour week. That’s sort of the norm, but it doesn’t have to be that way, and sometimes it can be very helpful to introduce people with ASD into work slowly. Seems a bit sort of unproductive at the beginning, but if that person is still going to be in the company 10 years later, losing a week or two at the beginning is trivial compared to the long-term savings. So, when we’re thinking about what we can do to minimize some of those things on my Venn diagram that we believe cause stress in the workplace, an obvious one as Bailey was pointing is to know about any sensory issues. And I always try and encourage my patients, unless they have the mildest of mild disorders, to let employers know about their disability because employers are not mind readers.
There’s a big problem with people with ASD going into higher education and not divulging to the disability office that they have ASD until it’s too late. At the end of the first semester, they’ve enrolled for four courses, it was too many, they’re stressed, unwell, and then they go to the disability office, say “oh by the way…” that’s not good. So, if employers are know to think about these issues, the person has to reveal, but they will only reveal if they know that information is on a need-to-know basis. They want to be confident that the person at the desk doesn’t know about their diagnosis if there’s no good reason for them to know. There are lots of different sensory issues, but in my experience the one that probably causes most problem is noise. Lights are an issue, but I think noise is much more common. And I always used to sort of underestimate the significance of this symptom until I had a very able mum in the UK who had autism but she had a child with autism as well, who was noise-sensitive and said “it’s like someone’s sticking pins in my head.”
So it’s not a psychological problem, there’s something wrong with the wiring. And that means that this sound is physically painful, and I think it’s useful to remember that it’s not just a preference for things being quieter, this is a type of pain. Another useful strategy is to identify, for the person with ASD, a quiet place that they can go to if they want to escape the hustle and bustle of a workplace. Or indeed, if they need time out at lunchtime, somewhere where they can go and eat lunch by themselves, I know it might appear antisocial to other people, but if actually you’re overloaded by one o’clock from the employers point of view, it’s better that we enable the person to recharge and be productive in the afternoon than to force them to have to pretend to socialize with their peers.
And I was so pleased that Bailey raised all these points. So distractions are a big problem. And so try to make sure, by careful arrangement of the physical environment, that distractions are minimized can really be very helpful. Now, a lot of what goes wrong in the workplace and exacerbates anxiety is due to a breakdown in communication. And that’s usually because
us, “the neurotypicals,” are being sloppy in our communication. So by and large, unless we’re giving a very clear instruction in everyday life, we don’t usually mean what we say, literally.
We mean some things subtly different and you have to work, it’s like a game we have to work out, what is really meant by looking at the person and thinking of the context, and then we know what we’re really meant to do. Well, that’s just making it very hard for people with ASD.
So, actually it’s much easier to think okay, if I was talking to someone where English was a second language, how would I construct my sentence so there was no ambiguity at all? And I think it’s often helpful if you know that someone is having this sort of issue, not only give verbal communication, but to put something in writing as well. The advantage of having something in writing is it’s there. You can go back and check on it. You might forget what someone, I often forget, but that’s what I sort of tell my wife that I forgot to put out the trash, but in everyday life we will, if we’re busy and preoccupied, we will often forget the last few things that we’re told to do.
If it’s in writing we can go back and check it. If it’s a complicated task, we can really unpick the instructions. And in my experience, most people with ASD, quite like having stuff in writing as well, or sometimes having more formal timetables for tasks than the rest of us like to have. The issues in terms of stress arising from social interactions not going well, usually come up more in off-work situations, than they do when people are doing the task itself. So, I’ve had lots of patients who work in retail. They know exactly how they meant to behave, with the customer, polite and handle those sorts of things very well. They go to the coffee room or the lunch room and suddenly they’re in new rules.
I had one chap who really got into difficulties ’cause I think someone asked him to join them all for a drink after work. I mean, it was an innocuous invitation, but he really didn’t know how to interpret the story. In his mind he was going there to work, so why would you go for a drink afterwards? and so I think when you’re thinking about how could things go wrong, it’s useful to think what guidelines can I give people for how to deal with people when it’s not a work-related task? And then the executive difficulties are ones we all face when we’re overloaded. Once we’re stressed, our executive (chuckles) function is the first thing to go down the drain. And so, when we’re all stressed, we get out pen and paper and we start making lists and we physically prioritize and we write reminders for ourselves and that will usually get us over the hump. And exactly the same strategies work for people with ASD, but they may not know to do it. They may not know they have to physically prioritize tasks or allocate a certain amount of time to things so you’re not spending too long on one task, or that if three different people, all ask you to do something at the same time that you you really don’t have to logically think through for a few minutes, “okay in the grand scheme of things, which is the most important of these, which do I do first?” But these are all things everybody can learn to do. It’s not rocket science, it’s just having a strategy for dealing with it.
And then, in terms of the broader issues we do need to make sure that we’re helping people into the right jobs. Quite often I see people being pushed towards any job because the person has been on the waiting list by having a job for so long that it’s starting to look embarrassing. So the next thing that comes along, the person is propelled towards. But actually, if it’s the wrong thing it’s not gonna last for long term and that’s very bad for the individual’s self-esteem. On the job coaching, it’s great but it’s expensive and isn’t widely available. We want to be increasing people’s responsibility at work in a timely manner, so that people can start to grow in a job and we can start them in the process of developing a career.
And occasionally, and this is occasionally, sometimes we have to create a job that doesn’t exist as we got someone with a particularly unique skill set,and we can see that actually someone could make use of this particular ability. But we’re gonna have to be a bit creative in thinking what that is going to be.
So, how do we deal with people who are getting anxious at work who also have ASD? I think the first thing to do is to, at an early stage, establish some routines for checking in and decide who that check-in is going to be with. Is it going to be with their immediate supervisor, or is there somebody else in the organization with more skills that it would make sense, but to make sure that that actually regularly happens and is meaningful isn’t just that are you okay? Good, goodbye, that’s not going to cut it. We also need to make sure that repetitive behaviors are not interfering with work performance, because what happens when we get stressed is we tend to revert to old habits, all of us. And what that means for the person with ASD, is that if they have some repetitive interests or behaviors that usually they can keep well under control and are not intrusive at all, the moment they become stressed, these things bubble up to the surface.
And I know Carol in particular has emphasized to me how much effort with her clients, she has to put into making sure that people are not having in the corner of their screen, one of their video games or something else that’s an interest. We have to lay down very clear rules about this and know if that is starting to happen, it probably means there’s something else going on.
In other words, there’s a stressors that we’re not aware of.
And that sort of leads me on to my next point, which is most of us are pretty good at knowing how we’re doing psychologically. We know if we’re anxious. We know if we’re scared. We know if we’re happy. We know if we’ve done something wrong when we’re feeling bad about it. The way people with ASD have self-awareness seems to be different in some way than the rest of us. I mean, we can measure this with questionnaires, but if I can’t put myself in the shoes of someone with ASD to know what that feels like, we just know that when you ask people questions about emotions, they have trouble describing their own emotional state. And I see lots, particularly teenagers and young adults, who really have no idea whether or not they’re anxious. Equally, they may not have a huge range of facial expression so no one else around them is going to know that they’re anxious. And when we get anxious, usually the first thing we do, is avoid the situation that making us anxious. That’s our sort of flight response and it’s a very sensible thing to do.
Of course, it’s useless strategy in the long term. Eventually, we have to confront our anxiety. But running away metaphorically the first time, it’s not a bad idea, but if you don’t know you’re anxious, you’re not going to leave the situation. And so quite often one will hear parents or school teachers reporting the flu as some blow up that they said was out of the blue. They were fine and then all of a sudden there was mayhem. But actually, if you hadn’t picked at it, it hadn’t come out of the blue at all. Something had happened an hour or two earlier when the person unbeknownst to themselves was stewing about it and then they couldn’t cope anymore.
So, we have to be very direct. Ask very specific questions. If you sort of sniff that things are slightly different than they are usually, or if their supervisors suspect something then it’s best to be extremely direct. That means watching for changes in behavior. Subtle clues may tell you
that someone is stressed before they even realize that they’re stressed. And then with the person, we can try and work out what it is that’s causing the stress and come up with a solution to reduce it.
We’re not terribly good at giving positive feedback are we? Certainly not in the UK. If no-one says anything to you, you’re doing fine, (audience laughs) otherwise you get a kick. You’re better, yeah you’re nice. Giving positive feedback to people who are anxious about their performance is a wonderful anxiolytic. If you’re worrying how you’re doing, someone telling you when you’re doing okay is a great help, and you shouldn’t underestimate the power of that very simple intervention.
And the topic of parents slightly came up bunch of time we were in a comment this morning. We wouldn’t normally think of involving parents in work-related issues, but the vast majority of my patients, even into their 40s, are still living with their parents. They’re not independent. In large part they’re not independent because they’re not in work. Their lack of independence is the major worry to their parents, particularly in the future, ie. what’s going to happen to this individual when I’ve died and there’s no one to take care of them?
And so there will be some situations when actually it’s right thing to do to ask the person, do you mind if I talk to your parents about this? because it’s the parents who have the most knowledge about the individual, and might say, “oh yeah, we had that problem 10 years ago. It was X. Why don’t you try doing something like this?” We don’t want to neglect a repository of knowledge, but it has to be with the permission of the individual themselves. And quite often it won’t be relevant at all but we’re so used to, in the workplace, thinking that people are just in the workplace and everything else doesn’t exist. It’s not quite like that if you’re dealing with someone with a disability, where you might need the advantage of that history about the person and the really in-depth knowledge of things that are helpful to them.