Providing practical support for people with autism spectrum disorder – supported living in the community
“The last few chapters managed to almost push me all the way towards giving the book one star. You can’t just claim in a book like this that very expensive and comprehensive support systems which you’re dreaming about are cost-effective without citing a single study, especially not in a context where you’ve just claimed that activities which usually end up costing a lot of money will end up saving money. If you envision a much more comprehensive support system, you can’t not address obvious cost drivers.
Some interesting stuff and important observations are included in the book, but the level of coverage is not high and you should not take my two star (‘ok’) rating to indicate that I am in agreement with the author. The main reason why I ended up finishing it was that it was easy to read, not that it was a good book.”
There are no inline citations, and examples of things people with ASD might need help with and ways to help them with these problems seem to be derived from anecdotes, not systematic research. The author repeatedly emphasizes that aid should be individualized and focused on the specific needs of the person with ASD, and although this makes a lot of sense it also makes recommendations very difficult to evaluate (it’s a bit like figuring out what’s going on in the context of other areas of psychological research, where therapists will often ‘mix methods’ when dealing with specific individuals, making it impossible to figure out which components of the treatment regime are actually helpful and which are not because even if people were to try to figure this out, power issues would make it impossible to estimate the relevant interaction effects even in theory); though it should be made clear that the author makes no attempt to do this.
I however found some of the observations included and specific points raised in the book to be interesting, and I’ll mention some of these in the coverage below.
“Professional support needs to be developed and executed in partnership with people and families. For support to be successful, all concerned need to be aware of its objectives and agree with the plan and strategies involved.”
I decided to start out the coverage with this quote because the book is full of postulates like these. Often specific cases will be used to illustrate points like these, but don’t expect any references to actual research on such topics – it’s not that kind of book. The approach employed makes the book incredibly hard for me to evaluate; some of the ideas are presumably sound, but it’s difficult to tell which because they didn’t do the research. In theory it’s sometimes easy to see how a given approach mentioned might lead to, or solve, specific problems, but you’ll often get the idea that perhaps there are tradeoffs at play here which the advice included does not take into account, meaning that in specific cases an alternative solution/piece of advice to the one proposed might lead to better outcomes by trading off the problems associated with the approach mentioned and the problems associated with an alternative approach. In some cases you perhaps would ideally prefer the parents of an adult child living outside the home of the parents to not have too much influence on support strategies employed even though they might traditionally have had a significant role to play in the context of support provision, because the family’s approach to problem solving might be counterproductive, in which case a support plan not supported by the parents might still in some cases be preferable to one which would be supported by them. The emphasis on individualized care throughout the book is, it must be said, on the other hand helpful in terms of thinking about such potential problems, but you still have this impression that a lot of the suggestions in the book are really not based on anywhere near a sufficient amount of data or research, and although they’re often ‘common sense suggestions’ it’s quite clear from a lot of different areas of psychological research by now that common sense can sometimes deceive us.
A general problem I have with the book is, I think, that I think the author is too confident about which support approaches/strategies/etc. might, or might not, work – and perhaps a key reason why she seems overconfident is that she’s not provided the research results in the book which one would in my opinion need in order to draw conclusions like the ones she draws, regardless of whether such research actually exists. A related problem is that quite a few of the concluding statements in the book are at least partly normative statements (which I generally dislike to encounter in non-fiction), not descriptive statements (which I do like to encounter). In the book she repeatedly makes claims about what people with ASD are like without referring to research on these topics, so you’re wondering how she knows these things, and whether or not those claims are actually true, or just true for a small subset of people with ASD which she’s encountered or read about. Many of the observations seemed familiar to me (having encountered them either in other textbooks, or having personal experience with the issues mentioned) so I’d be likely to grant that many of the observations are valid, but you are sometimes wondering how she knows the things she claims to know. A big problem is actually the way she covers the material; she covers various topics in various chapters, but the way she does is makes it relatively hard for a reader to know which parts of a given chapter might actually be useful for a specific individual curious about these things; another way to do things might have been to split the coverage up into chapters about support provision for people with low support requirements, and other chapters about support provision for people with high support requirements. It’s made clear in the book that needs are different for different individuals, but you’re often sort of wondering which passages are most relevant to which groups of people with ASD. One might argue that ‘people ought to be able to tell this on their own’, but then we get to the problems that people with ASD tend to be bad at asking for support, perhaps not realizing that they need it, and the problem that people without ASD who do not know much about ASD perhaps have a difficult time figuring out which types of help might be useful in a specific setting. This stuff is difficult as it is, but I don’t think the way the coverage is structured in this book is helping at all with solving these sorts of issues.
Oh well, let’s move on…:
“The ultimate aim of support should be to improve skills and develop strategies to enable the person with ASD to feel in control and better able to cope independently.”
“The fact is that extremely able people with ASD frequently struggle with day-to-day life skills. Very intelligent students cannot organize themselves to launder their clothes, and may get up to find they are all dirty or still wet in the machine from several days ago. This is one of those superficially trivial things that can be a major problem to the person it repeatedly happens to. On a practical domestic front, what may be a massive difficulty for a person with ASD, may be an easily solved problem for someone without it. […] People with ASD like to have regular routines. The ability to adhere to routine is an advantage in many situations, and this skill can be used productively. Structure and organization can be brought to running the household. As a plan is constructed, problems can be considered and systems put in place to deal with them. A planning session when the individual collaborates with support to work out a weekly menu and the necessary shopping plan, gives the person more autonomy, than having someone turn up to go shopping or cook with them. Having someone alongside is sometimes necessary, but has the disadvantage of creating dependence. The individual is empowered instead by being facilitated to complete tasks independently. […] The best support methods promote independence. […] The aspects of forward planning can be incredibly challenging for a person with ASD, regardless of their intellectual level. […] As people with ASD have great difficulty seeing consequences or planning ahead, they may find it hard to become motivated if the gratification is not instant. Things have to be broken down and explained in a practical way.”
“Most people instigate minor changes easily. It may be more convenient to vary a normal routine on a particular day, even pleasurable. I might decide that as it is a sunny day I will go out, and do the housework in the evening. As a supporter for someone with ASD it is vital to remember, that he will not have the flexibility of thought that people generally have and so may need routines to be more stringently adhered to. Such a simple adjustment may not be easy, and it may be preferable to stay with the usual unless there is a strong argument for change. The world becomes easier to interpret if as much as possible is held constant. […] Change is easier to manage if we know it is coming. The better prepared someone is for a change, generally the easier it is to cope. For people with ASD, it helps if the preparation can be as concrete as possible.”
“The paradoxical nature of ASD is demonstrated again in attention span. The person will be absolutely absorbed, blocking out the rest of the world, when he is engrossed in something of particular interest; but at other times his attention span can be low. Most people will recognize the experience of being called away to answer a phone call, or speaking to a visitor and completely forgetting that they were in the middle of doing something. This distractibility is a common experience for those with ASD. […] I often think that ASD is the source of the stereotype of the ‘absent-minded professor’.”
A personal remark on these topics is perhaps in order here, and I add it because it is my impression that mass media portrails of individuals with these sorts of traits are generally if anything favourably inclined; in the sense that distractibility, forgetfulness and these sorts of traits are in those contexts in general traits you smile about and which are mildly funny. My impression is that the first word that springs to mind in these contexts is ‘amusing’, or something along those lines, not ‘annoying’. The downsides are usually to some extent neglected. However I know from Real Life experience that things like forgetfulness and distractability can be really annoying. Forgetting the key to your flat and locking yourself out of your flat (multiple times); forgetting to bring home your laptop from the university and having to go back and get it while worrying about whether or not it’s been stolen in the meantime (it fortunately wasn’t); getting caught up in an interesting exchange on the internet causing you to you forget that you turned on the stove an hour ago (or was it two hours ago? Time flies when you’re engaged in stuff that interests you…), so now you’ll have to spend another hour trying to clean the pot and separate the charred chunks of vegetables and the metal; getting a burn while taking something out of the oven because you were thinking about something else and didn’t pay sufficient attention to the task at hand – these things border from annoying to dangerous, as also noted in the book: “Depending on what we were doing, finding that we have left something in the middle of it can be anything from mildly annoying (left the kitchen half cleaned) to very distressing (left the pan on the hob and burnt the house down).” Similar observations might be made in the context of ‘clumsiness’ (not a diagnostic trait, but apparently often observed) and combinations of these traits. The sorts of things people often find amusing when they happen to, say, cartoon characters are a lot less funny when they happen to you personally, especially if you are having difficulties finding ways to address the issues and other people are impacted by them as well. Problems like these may cause amusement among others, but I know from both personal experience and the experiences of a good friend of mine that they may also cause profound exasperation among the people around you.
“Difficulty with communication is a core problem for those with autism spectrum disorder (ASD). Some people have little or no speech, some have an extensive vocabulary, some make grammatical mistakes, some have a wide use of language – but all people with ASD have problems with communication. These problems are extremely complex, leading to much misunderstanding, confusion and stress. The more sophisticated the person’s language is the greater the problem may be. Ros Blackburn, a highly intelligent British woman with ASD who gives many talks on the subject, highlights that a person’s ability can also be their greatest disability. As a verbal, intellectually able woman, she finds that people do not appreciate the support that she needs in everyday and social situations. The power to have a seemingly normal conversation can cause many troubles for a person with ASD by giving a false impression of their comprehension. […] Care should be taken not to give too much information at one time. People with ASD generally process language slowly and have difficulty handling a lot of verbal input. […] People with ASD work through matters slowly, and speed of discussion is problematic. […] So time needs to be offered to assimilate information before a response is expected. […] For most people with ASD, it is easier to talk if there are fewer people in the group. In a large meeting there is too much to take in, and few silences in which to process what has been said. […] They almost always prefer one to one conversation to group discussion, and small intimate gatherings to parties.”
“We all make blunders in relationships. We misjudge what is acceptable in a situation, mistake another person’s intention or misinterpret someone’s meaning. We then feel upset, isolated and embarrassed. People with ASD are more prone to doing this sort of thing than most – and they do experience the same unpleasant aftermath. […] Coping well is a double-edged sword; the better a person manages, the more likely he is to be judged harshly when he does make a mistake. […] Some people with ASD are able to think their way through social situations. They teach themselves or have been taught to interpret non-verbal signals. They can use cognition to remember that the other person may feel differently to them, and to compute what their perception and emotions may be. This is a slow, cumbersome method compared to the automatic, rapid assimilation that those without ASD make. Even those who compensate well appear slow, stilted, awkward, and are liable to make significant mistakes.”
“Neurotypical people (NTs) are as lacking in empathy towards people with ASD as vice versa.” This is in my opinion a bold claim and I’m not sure it’s true, but I think she does have a point here. I think it’s likely that NTs often judge people with ASD based on the standards of NTs; standards which may well be impossible for the person with ASD to ever meet, regardless of the amount of effort the individual puts into meeting those standards. She however argues later on in the coverage that: “Most people are not unkind, but are unthinking or, because of lack of knowledge about disability, make incorrect assumptions.” This seems plausible.
“The rigidity of AS thinking and the tendency to obsess means that a worry can escalate and dominate a person’s life. […] As a basic rule of thumb, regular, familiar routines are better stress busters than a novel idea. A holiday, for example, is more likely to add to stress than relieve it.” (This sounds very familiar, and I’ll keep this quote in mind…)
“Many people with ASD remain more susceptible to parental influence than the majority of their peers. […] All people with ASD, including the highly intelligent, are susceptible to being led by others and it is very easy for the person offering support, either knowingly or unwittingly, to lead the person down a route, which is not the course he wants to follow.”
“Social inabilities create problems for people with autism spectrum disorder (ASD) in establishing peer relationships and so naturally accessing the support that evolves between members of groups, such as work colleagues, fellow students or regulars in the pub. Asking for assistance appropriately will be challenging for people with ASD. […] adults often only appear on the services ‘radar’ when they reach crisis point. Forty-nine per cent of adults with ASD are still living with their parents. […] Only 6 per cent of adults with ASD are in full-time employment [no sources provided, US]”
“It is not always possible to tell from meeting a person or even from having regular contact with him that he has autism spectrum disorder (ASD). Individuals therefore face the decision as to whether or not to disclose that they have the disorder. […] Generally disclosure is on a sliding scale. Most people tell close family; whilst it would probably be inappropriate to tell a casual stranger. Some will disclose to professionals, but prefer to keep the information from social contacts. […] There are no easy answers as to who and when to tell. Disclosure to professionals in formal situations appears advisable so that all are aware of the condition and any differences are accepted and planned for. Informal social situations are more fluid and difficult to read.”
“NAS statistics show that only six per cent of people with autism spectrum disorder (ASD) (12% of those with Asperger Syndrome (AS)) in the UK are in full-time employment. This compares with 49 per cent of people with general disabilities who are employed. […] Given the talents which many with ASD have, this is a great loss to the workforce. […] Traits common to ASD, such as conscientiousness, attention to detail, perseverance and loyalty, are great assets to an employer. […] People with ASD tend to be loyal, to stick to routines and dislike change. […] The characteristics of the disorder mean that the individual may not make a good impression at interview. Social skills will not be a forté. […] The employer needs to be aware of any ASD traits the person displays, such as lack of eye contact. Questions may be prepared with support so that they elicit the information needed, but are specific, factual and clear. Broad questions, such as, ‘Tell me about yourself ’, will leave the interviewee floundering. […] Interviews are not always the most appropriate way of assessing candidates, especially not those with ASD.”
The author does not address in the book the specific problems and tradeoffs related to the question of whether or not it’s optimal to disclose an autism spectrum disorder to a potential employer, but rather seems to take it for granted that the interviewee should always disclose, preferably beforehand. I’ve given this a lot of thought, and I’m really not convinced this is always the right approach.
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