Transcript
Tony Attwood Hi there, this is Tony Attwood. I’m a Clinical Psychologist, and I’ve been exploring autism for over 50 years. It’s been a wonderful experience. What I’m going to do is pass onto you today some of my wisdom, as a Clinician, working with children, adolescents, adults, and aging individuals, on the autism spectrum [pause].
Now, first of all, you would send out a variety of screening instruments, that would be there to identify autistic characteristics, often completed by a parent and, probably, a Teacher, and you would score and review those instruments. What you’re going to do in the diagnostic assessment is actually assess the authenticity of the various components that have been, shall we say, flagged by the screening instruments.
Now, the actual diagnostic process itself may be an individual Clinician, with considerable wisdom and experience, or a multidisciplinary team. Now, the crucial component, during the diagnostic assessment, because this is autism, is to engage with that individual. A major component of autism is a difficulty understanding people, so you need to present a good model, and encouragement of engagement. You give out signals of social interest, and also check the child or adolescent’s degree of reciprocity, response, and so on.
Now, if you are having a conversation, you are going to explore the person’s experiences and concept of friendship, looking for any aspects of developmental delay, bullying and teasing, or any concerns. It’s also their social play, for young children, to actually engage with them, for adolescents, it’s more talking about their interests and engagements with their peer group. But you’re looking at the person’s ability to read social situations, people, facial expressions, body language, and so on. Also, their interests, you are exploring if there is anything unusual in intensity or focus. And I find that’s a great opportunity to understand what the autistic person is like, when they’re engaged in their interest, and it’s almost like having an on button, and the person can become really quite animated in talking about the things that they’re particularly interested in.
So, other aspects that we look at are in terms of any challenges that may occur at school and at home, especially sensory experiences, and coping with change and uncertainty. So, in other words, there are many dimensions that you are exploring. From my point of view, I have a, sort of, a script, but what I will do is go with the moment, I don’t always follow them in sequence, I seize the moment and explore various aspects.
Now, what you’re doing during the diagnostic assessment is making a note of the degree of reciprocity, reading your facial expressions, body language, but, also, the child’s use, or adolescent’s use, of non-verbal communication. But you’re also looking at the signature language profile. Now, that can be pragmatics, pedantry and prosody, but there is a signature language profile associated with autism.
Now, there are standardised instruments, we’ve had them for a number of years, and they’ve been really central in the diagnostic process. Now, there may be the ADOS, the DISCO, or the MIGDAS-2, etc., and each have their particular qualities. But what I would do, as a Clinician, I often supplement my diagnostic assessment with some of the things that I have used and learned by stories, pictures, a whole range of things.
So the ADOS, in particular, is very good for what may be called classic autism, but not so good with autistic girls, especially teenage girls, those of higher IQ, etc. So, I would not use the ADOS as the only instrument, others that I would use. Now, there may be, for example, the CARS2, or the Modified Questionnaire of Autism Spectrum Conditions, which I actually contributed to, which was specifically designed to identify autistic girls.
So, use additional instruments. Now, if it’s a multidisciplinary team, they will have their own instruments, the Speech Pathologist will have their instruments, the OT, and so on, Psychologists may look at cognitive profile, and so on. But I also use a range of activities to assess theory of mind skills, they’re little activities, stories, and so on, that you engage with, that help you to understand theory of mind, empathy, in particular, that is not only cognitive empathy, but emotional empathy, and behavioural empathy, and ability to read cues, and understand the motives of people in a series of photographs. So, you’re looking for, also, any indicators, during the diagnostic assessment, of ADHD or language or intellectual impairment, but, also, motor co-ordination and dexterity. So, it is a very complex process and there’s a lot to go through.
Another point that you need to do is also discuss with the parents the, shall we say, the authenticity of the actual replies. So, the person may say, “I’ve got lots of friends,” but the parents may say, “Well, actually, they’re acquaintances,” they’re not really true friends, as his peers would expect. And, really, you need a second opinion as to the validity of what that person may have said or done. Particularly in the area of camouflaging, and many autistic individuals, especially the girls, may camouflage and may be a very different person in front of you, as an adult, as they are with their peers, or at home, in a way. So, it’s also that they can confirm issues with emotion management, and a whole range of areas of their concern. So, that’s my answer to a very important question, in terms of the diagnostic process [pause].
Now, obviously evidence-based programmes such as applied behaviour analysis, cognitive behaviour therapy and sensory integration therapy, but some successful strategies have yet to be evaluated by formal research studies. It doesn’t mean to say that they’re not any good, is they’re not confirmed yet. And this is where the individual Therapist may decide what they are going to use, from their own clinical experience, prior to independent research confirming the validity or evidence-based approach. So, it’s up to the Therapist to decide what to include.
Now, each autistic child is different. One of the fascinating things about autism is the heterogeneity of what’s involved. And I prefer a very eclectic approach, that takes various components of that autistic profile, and the diagnostic assessment is identifying the autistic profile, and you may find that you can use bits from various therapy or intervention programmes that are unique to that particular child. So, I prefer an eclectic approach of several interventions, based on knowledge of that individual, that may change over time. Now, it’s also important to assess the practical nature of that intervention, and that’s from the parents’ perspective. Do they have the time, energy, and resources to be involved with the programme? Sometimes with multiple children, and all sorts of family crises, etc., you may have designed the fantastic programme and you know it’s going to work, but they haven’t got the time, or they haven’t got the energy, they’re burnt out, or resources. So, you really do need to tailor the intervention programmes for the home circumstances.
But there’s also the question of, does that individual on the autism spectrum actually relate to you? And autistic individuals can be very black and white in who they like and they don’t like. And the trouble is, if they make a decision that they don’t like you, it doesn’t mean to say you’re not a good Therapist, it’s just not a rapport between you, and the barriers may come down. So, it’s very important to develop a rapport with that individual person [pause]. Hmmm, what I would tend to do, clinically, is create a list of concerns, both of the parents and the autistic person themselves, and there may be differences. Parents are concerned with personal hygiene and managing the meltdowns, but the autistic person is more concerned about, “How do I make friends?” And, “How do I spend more time on computer games?” So, you’re going through what are the, shall we say, important areas to address in intervention, you make a list of them and put them in rank order, with considerable weight given to the child or adolescent’s personal choices. Now, if it is something that they choose, then you’re going to have far greater motivation and attention.
Now, the decision needs to be made as to whether an intervention programme is likely to succeed for each challenge. So, if you’ve got your list, this is very, very important, but actually to achieve success in that is going to be difficult to go through. So, what you may do is start in your rank order, at the lower ones, you’ve chosen the top five, and what you may do is say, “Okay, let’s choose something relatively easy, let’s succeed with it, that’s going to give confidence, motivation, and commitment to future interventions.” So, the decision of which area do you move into and provide intervention may be based on practical circumstances, and then work up through the hierarchy, to those things that are, shall we say, more of, shall we say, a consistent and a daily concern, but perhaps waiting until other strategies have been learned [pause].
Well, my personal opinion is the best measure of success is, is the autistic person interested, motivated, and co-operating with the programme? If they do, then it’s successful. And that’s your best measure of success, is that person engaged in what you’re suggesting, actually applying that, not only in the therapy sessions, but, also, outside, in real life settings? Then you know you’re onto a winner.
So, it’s their enthusiasm for the intervention I think is one of the best measures, is whether they turn up. Because if you have a therapy session, they’re making a choice between you, as a Therapist and Minecraft, and that means that you are probably better than Minecraft, if they turn up. So, it’s motivation and attention are going to be very important components. Now, there are a range of before and after instruments, for example, instruments that measure anxiety and achievement levels in a variety of areas. So, yes, it is very important to be evidence-based, and to have confirmation of change over time. That can also be used with the autistic child or adolescents to focus on the value of the programme, and the changes that have occurred.
Now, it’s also important to check on the parents’ perception of the intervention, and ask them to identify potential barriers for the implementation, and to work constructively together, in terms of how to remove those particular barriers. Now, they have extensive knowledge of their son or daughter. They have a knowledge not only of their abilities, but their personality, what has worked, and so on, in the past. So, they are a central, an essential, part of the intervention team. So, it’s very important to consult with them, to say, “Hmmm, I’m having a bit of a problem with trying to get this particular concept across,” and say, “Have you any ideas?” And they say, “Ah, relate it to his special interest, it’s” – whatever it may be, “Doctor Who.” Right, use the metaphor of Doctor Who, that’s going to capture his attention, that’s going to be a visualisation that he can use. So, check with parents, can they make any suggestions for the programme [pause]? Now, the primary professionals are obviously Psychologists, Paediatricians, Speech Pathologists, and Occupational Therapists. However, due to the profile of autism, and my extensive clinical experience, I do recommend considering Music and Art Therapists, yes, especially for concept of self and emotion regulation, and communication aspects for those who have difficulty speaking, and so on. So, there’s a lot to be achieved by work with Music and Art Therapists.
And interestingly, the career of that individual may be in the arts, but it also may be somebody like a Personal Trainer. I’m involved with emotion management, which I sometimes call energy management, and they may need a Personal Trainer, or Physiotherapist, who will design physical activities that burn up the energy of agitation, that are activities that that person finds achievable, enjoyable, and are very good are reducing excess emotional energy.
But, also, there is increasing research evidence and personal evidence, clinically, in the value of yoga, mindfulness, and meditation. Yes, not every autistic individual responds positively. I found about a third may not respond positively, but two-thirds, one-third, very much, another third, oh, take a bit of time, can be very valuable for an autistic person. So, it’s a very, very broad approach. Now, there’s also the question, should the intervention be conducted individually, sometimes one-on-one? ‘Cause in autism, two’s company, three’s a crowd. But you may also consider, especially for autistic teenagers, autism groups. Now, this may be if you’re dealing with eating disorders, gender dysphoria, alcohol and drug consumption problems, and so on, is having an autism group, which is autism friendly and mutually supportive, and they provide advice for each other. So, group activities can be very, very successful [pause].
And one of the major things is to determine their learning profile, because they’re going to have to learn how to socialise, read non-verbal communication, to make friends, all those sorts of things. So, in therapy, you’re learning, and you need to assess the learning style of that individual. Now, for example, some autistic individuals are visualisers, they’re the natural engineers or artists. Now, that means that it’s often computer-based, or graphic design instruments and activities that may be appropriate for that individual.
Often, teaching, education and therapy involves a social and conversational context. In autism that’s not easy. So you may have programmes on computer apps or computer programmes. This is the big, shall we say, frontier in autism now, is a lot of programmes that range from communication right the way through to emotion management, or adaptations to Minecraft and various things, and so on. You’ve got the person’s attention, they enjoy those particular games, so it’s using visualisation as much as you can.
But, also, if you’re using a manualised approach and the person has to complete and write their comments into that manual, one of the problems is going to be handwriting. So that needs to be assessed, and consider that there can be typing, or a scribe, or somebody to overcome that problem. It’s also important in the adjustments that are needed to consider the sensory aspects of the room, and that may be in terms of the light that’s coming in, it may be in terms of sounds, aromas, furniture, colours, etc. It’s trying to make the room as autism friendly as possible, but, also, the number of people, and, also, personal space for autistic individuals.
It’s also important to acknowledge the attention span. There is an association with ADHD, and it may well be that the person needs to have the activities that they can do within their attention span, and you’re very aware of when that’s ended, then time to take a break. But, also, to use relaxing and fidget toys, because they are soothing and calming. Also, have a look at positive reinforcement for what they do right. One of the characteristics of autism is a fear of making a mistake, but a great delight in getting it right. They’re going to need a lot more positive feedback and reinforcement for what they’ve done right. And, also, integrate the special into the therapy, because you’ve got the attention and a metaphor for whatever you’re trying to explain.
For example, in emotion management, I had an autistic person who was fascinated by the weather, and I used weather systems as a metaphor for emotion management. So, “You’ve got a depression coming in, you’ve got foggy thinking,” and so on, so it’s using that to include in your programme. But it’s also the cognitive inflexibility of not knowing what else to do, and sometimes the person needs external prompts or suggestions of what to do, a consistency and a routine, don’t have surprises, which can be very upsetting. But, also, be aware of alexithymia, difficulty converting thought and emotion to speech, and issues with interoception. So, those are some of the adjustments to be made with regard to therapy [pause].
Well, the answer to that is really within the previous question, it’s to become autism friendly. Now, that’s autism friendly in terms of the room and accommodating the learning style, etc., but it’s also being very positive in attitude towards autism. And it means that you are interested in their interests, and you may begin and end the session with a focus on the special interest, to develop a sense of rapport, but it can be to get that degree of connection. Now, if they trust you, and if the rapport is developing, then they’re going to feel safe, relaxed, and can then focus on the therapy [pause].
What I would recommend is that there are now instruments specifically designed to assess aspects of autism that are standardised on autistic kids. For example, if you look at anxiety, it’s a major problem. One thing that autistic individuals are very good at is worrying. 85% have daily issues with anxiety. Now, Jackie Roberts in the UK, and colleagues, have developed the Anxiety Scale for Children with Autism Spectrum Disorder, and modified it for younger children, and for adults too. So, this will provide you with the specific questions related to anxiety associated with autism.
Now, in my own book, with Michelle Garnett, “Exploring Depression, and Beating the Blues,” we have a list of reasons why an autistic person can feel sad or depressed. So, you just go through those reasons, and ask them to rate how important that is. Zero is, nah, that’s not a reason, or ten, ah, that’s a significant reason why I’m very depressed. Now, we also look at a recognition of a range of emotional mechanisms for repair of intense emotions. Now, we go through a range of tools, of a emotion repair toolbox, but also with an emphasis on things like mindfulness and yoga, physical activities to burn off the energy, strategies to improve interoception and alexithymia. But also to improve social skills, so if you’re dealing with someone with an eating disorder, or gender dysphoria, etc., and you explore what are their concerns, sometimes their concerns are also related to social connection and friendships. So, part of the intervention programme may be to encourage particular friendship skills, when the focus is on depression and suicidal ideation, and so on, but friendship is one of the major reasons that they’re depressed, you need to focus on friendship.
You also look at maladaptive thinking that can occur. There can be a tendency to be very catastrophic, huge explosion over something, very black and white thinking, and using strategies such as avoidance, suppression and thought blocking, like computer games, and so on. So, it’s looking at adaptive thinking, particularly self-soothing, can be difficult in autism, the ability to disclose, with alexithymia and trust of individuals about your feelings, but, also, aspects of cognitive restructuring and cognitive flexibility. So, those are the sorts of approaches to traditional therapies [pause].
Well they are central. What you don’t want them is to sabotage the programme. That you need their commitment to it. That’s why they very much need to be consulted, their advice accommodated, etc., and to encourage and give positive feedback to the parents of what they’re doing. Sometimes what I will do is go through what strategies the parents have used, and then go through what have been the value of those particular strategies, but then say, “Okay, those are some of the strategies, I can understand that you’re using, but what I’m going to go through are some additional strategies. I’m not saying that we need to totally change your approach, but these are some ideas for you to consider and see how they work.” So, it’s the co-operation and effective communication in the design and implementation, they are there all the time.
When I’m working with an individual, I will often have the parents there sitting in, because then they know what’s involved and can then apply that and become a mini-me in real life social situations [pause]. Okay, well, some of them are very obvious. Waiting time for assessment and therapy, it’s dealing months in years, and that’s such valuable time. So, it’s waiting times, I know the government is trying to deal with that, but once you’ve got an assessment and confirmed autism, the issue is then what support is available? And some parents are disappointed that, “Wow, we know we have autism here in my son or daughter, but where are the programmes to help that individual?” So, it’s both assessment and therapy.
It’s also at CAMHS, staff knowledge on autism needs to be regularly updated, to attend in-service programmes, but, also, to have access to autism specialists. So that you may have an autistic person, and you think, wow, the complexity here is beyond me, I’ve not come across this before, is there an autism specialist in my local area or nationally that I can contact to seek advice of what to do? And that person may say, “Ah, yeah, I’ve known this before, these are the things that are likely to work, these are unlikely to work.” So, you need almost like a tertiary referral system, an access to expertise, beyond that, within the CAMHS team.
But another problem is going to be staff turnover, and the characteristic of autism is having difficulty in forming a rapport or relationship, and coping with change. So, when there’s a staff turnover, that can also be a problem, and can set things back. So, those are the issues, and, hopefully, there are some solutions [pause].
Now, one of the things that I found very helpful, in looking at the future, is to focus with the autistic adolescent on the concept of self, “Who are you in terms of your qualities and difficulties, your strengths, and the things that you’re motivated and interested in?” Now, it’s to use that to make a career choice, but also relationship decisions. So, I do strongly recommend that part of the intervention is, “Who are you?” Very difficult for autistic teenagers to answer, but in understanding the positive qualities, you’re going to get much more, shall we say, effective decisions in career, further education, and relationships.
Now, the person is also going to need guidance in daily living skills, such as budgeting and nutrition, and avoiding junk food, as much as you can. So, if they are going to eventually become more independent, it is an assessment of daily living skills and what needs to be covered. But there’s also the preparation for the transition to further education and employment. Change is very difficult for autistic individuals to cope with, but they need information as much as possible, and preparation for the change in stages. So, it’s finding out what university, college, have a look at the place, find out what the courses are, go around and have a look at the buildings, etc., the geography of the campus. But, employment, it’s trying to find out the attitude, and so on, of various employers.
Now, I am a strong advocate of the publisher Jessica Kingsley Publishers, jkp.com, and they have a lot of books on the transition to further education and employment, and to go through those books with the individual. I’ve actually written one on “Autism Working,” with my colleague, Michelle Garnett, published by jkp.com, which is a manual for the person to go through in finding, seeking, and maintaining successful employment.
It’s also how well does the university or college or workplace cope with autism? And it’s really looking at what we call here in Australia Neurodiversity Hubs, and connecting with that support network for the individual. So, how well does the university or work accommodate autism, and what are their support systems? But it’s also the issue of leaving home, when, and how, and the confidence, and so on. Sometimes there’s a developmental delay, there is in most teenagers in modern society anyway, but if they are going to leave home, the various adjustments that may occur.
But, also, long-term, guidance in identifying good friendships and not to be abused. This can be a problem in their determination, enthusiasm for developing connections with people and friendships, it may not be the people that would be good for them in the long-term, and avoiding abuse and assault that can occur. So, it’s the ability to identify someone who appears friendly, but is not genuinely a good friend. So, there are many things that need to be covered in the transition to being a young adult [pause].
Ah, I’ve been specialising in autism for 50 years, a lot has happened in that time, many things have come and gone. But one thing I do know is autism describes a very heterogeneous group, and there are always exceptions. There are the outliers, and they may benefit from a particular programme, but it is unique to their origins of autism and their autism profile. Thing is, parents who have had that particular progress think it’s wonderful, and it’s genuine for that person, and they want to tell everybody that this is a universal programme for all autistic kids. Well, it may work for that individual, but not autism in general.
So, it’s a very heterogeneous group, and there are no universal therapies for all autistic individuals. Now, obviously there are conventional evidence-based therapies, and over the last 50 years or so, I’ve seen the rise and fall of a range of interventions. One, holding therapy, several decades ago became very, very popular, it was in the media, now they realise, no, it’s not as effective. Auditory integration training, or dietary interventions to cure autism. I think that the media is wanting a cure, and as soon as something is looked at positively may amplify the success of that individual. So, it may be to be conservative about that, and make your own clinical decision about the various therapies, and so on.
But it does mean parents will say, “What do you think of? “Should I try this?” And you need to be objective and supportive of the parents, because they can be tempting, and certain entrepreneurs may promote certain programmes that will make a lot of money for the entrepreneur, but may not be suitable for that autistic individual, or the majority. But I also recognise, and this is my last comment, the placebo effect. When you have randomised controlled trials and a whole range of investigations, and it’s uncertain whether that particular child or adolescent actually had the therapy, maybe the medication, for example, that was supposed to be assessed, you find that the control group, the placebo effect, is considerable. They didn’t have the genuine article, but there was actual progress, and that is due to a positive attitude. Parents are looking for success. They don’t know if they’re actually having this particular medication or therapy, but they are now thinking, oh, they might be, and they change their attitude to notice what the person is doing well, that could be due to the tablet or the therapy, but it then becomes a very positive way of genuine change.
So, my particular view is encouraging a positive attitude with parents and Therapists, can have extremely powerful effects. It’s basically not extreme, but by being positive, you will have positivity in response.