Emma’s score of 11 on the ADOS-II did reach the cut off for a diagnosis of Autism Spectrum Disorder (ASD).
History
Brief introductory blurb without over-sharing (actually, I realise it’s gone on a bit). As a lifelong sufferer from anxiety (and more intermittently, depression) I’ve consulted a variety of services over the years, but most recently (prior to last year) the NHS’ ‘Talking Therapies’ service, part of NHS England’s Improving Access to Psychological Therapies (IAPT) project. (Back in the day, a GP practice would often have one or more counsellors who worked with them, whereas this isn’t the case any more due to funding cuts. So on the surface it’s hard to see how access to therapies has improved, particularly for those who might fancy talking to an actual person as opposed to a voice on the telephone. Anyhoo. Much as I am in general quite fond of technology, the internet etc, I do feel that therapy is possibly one of those things that shouldn’t be moved online.)TT is the first – indeed, the only – thing GPs will refer you to now if you present with anything short of extremely severe mental health problems. TT’s ‘entry level’ service seems intended as a breezy way to help sufferers from milder psychological conditions get back up to speed. In reality, the first-level offering means telephone sessions with a ‘Personal Wellbeing Practitioner’ (I know) who, in the case of the one I was assigned, is apparently sitting in a call centre and reading from a script. If the entry level sessions don’t work for you, you can get access to TT’s second level offering, which involves going on a waiting list to receive a set number of face to face sessions, still of CBT-style therapy but rather more tailored to your actual needs.
I had a number of sessions on this occasion with a PWP plus doing exercises on an online CBT program. I actually thought the program (‘SilverCloud’) was OK as far as it went (though the content is frequently banal: a typical multiple choice question would be: “When you feel anxious or low, is it best to a) ignore it and hope it goes away; b) talk about it with someone; c) drink heavily”), but was less satisfied with the general format of the sessions. As a consequence of feeding back fairly negatively, I did get a mollifying phone call with another woman, who after some discussion agreed to refer me on to their second level offering. I duly had a far more useful hour’s introductory session with a very nice young man, where I explained what I felt were issues. I returned for the next session to be told that he had spoken with his supervisor who had suggested that some of the issues I’d raised suggested possible Autism Spectrum Disorder (ASD) and that I should be referred for an assessment. I was surprised but open to the idea, so agreed. This was in May 2017. When I still hadn’t made it anywhere near the top of the NHS waiting list by summer 2018, I cracked and decided to pay for a private assessment.
Finding reputable places that assess adults took a bit of research, but I eventually picked The Practice MK, partly because they also do NHS assessments as well as private ones and rightly or wrongly I took this as a good sign. They’re based at Warren Park, pretty much just down the road from my flat in Wolverton - which obviously wasn’t a strong reason to pick them, but still. Unfortunately, being registered out of the MK area I couldn’t be seen under the NHS but had already reluctantly signed away the quite large amount of money involved as a necessary price to pay.
The assessment
This was in two parts: an initial hour's consultation - at the end of which you get given an indication of whether the psychologist does think it's worth proceeding to a full ASD assessment - and then a longer session (a few weeks later, in the case of mine) which constitutes the main bit.The initial consultation was an hour's ‘free talk’ session with a clinical psychologist, given over partly to me talking freely about issues that had led to my NHS referral, and partly to the psychologist asking questions at intervals. As is the way, I have no memory now either of the questions nor of what I said in reply. However, the upshot was that based on what I'd told her, she did feel that proceeding to a full diagnostic assessment would be a good idea.
The main assessment
A few weeks later I went for a full assessment of several hours with a Katherine Goodsell, Principal Forensic and Chartered Psychologist.- The ADOS 2 Stands for Autism Diagnostic Observation Schedule (Second Edition). This seems to have been the main test instrument, though The Practice stresses that they never reach a diagnosis based on just one instrument.
- Katherine’s questioning began with some questions clearly designed to weed out whether I had any comorbid learning difficulties; I think after my somewhat offended response (and possible reference to my PhD) she was satisfied that I don’t. According to this NAS page the ratio of people on the spectrum who also have a learning disability, vs. those who don’t, is about half and half.
- Parts of the ADOS 2 struck me as a bizarre instrument to use with adults – use of storytelling from pictures, etc – but it would appear to be a respected tool. According to The Practice, it's "considered as the 'gold standard' for observational assessment of autism spectrum disorder". It's used to - supposedly - gain insight into the individual's abilities in communication and reciprocal social interaction.
- There are several ‘modules’ of the ADOS 2; Module 4 is the one used for adults. A total score is arrived at from the separate scores for Communication and Social Interaction. The cut-off for being counted as on the autistic spectrum is 7.
- The Social Responsiveness Scale (SRS-2) This was a questionnaire which I was asked to complete. I was also asked for someone who has known me for a good while – but not necessarily a parent – to also complete it, so asked Ray. Interestingly, both Ray’s and my versions came out almost the same in terms of scoring, though neither of us saw the other’s responses before they were submitted. The report blurb has it that both the informant and the self-report version of the SRS-2 “indicate that [Emma’s] overall score falls within the Moderate range. This suggests that she experiences deficiencies in reciprocal social behaviour that are clinically significant and lead to substantial interference with everyday social interactions. Such scores are typical for individuals with autism spectrum disorders of moderate severity.” I’m half-hoping that’s standardised wording as I do feel I manage slightly better than that implies.
- Sensory Profile This included something called the Q-global questionnaire, which I completed online before the assessment. Apparently it’s testing for sensory issues. I actually remember nothing about the content of it.
- The Sensory Profile works on four Sensory Quadrants. I scored ‘Much More Than Most People’ in both the Sensory Sensitivity and Sensation Avoiding quadrant.
- The Beck inventories And a couple of old familiars: the Beck Anxiety Inventory (BAI): my T Score = 86 (Severe; an average is 50). This one wasn’t much of a surprise. And the Beck Depression Inventory (BDI): my T Score = 73 (Moderate). I’m guessing these are included because anxiety and/or depression are often comorbid with ASD – in particular, high functioning cases that have gone undiagnosed for quite a while (hello). In fairness, I think both of those scores should have gone down a bit thanks to getting an actual diagnosis.
Individuals with Sensory Sensitivity have low neurological thresholds that cause them to respond readily to sensory stimuli. Behaviors associated with Sensory Sensitivity include distractibility and discomfort caused by intense stimuli. Advantages of Sensory Sensitivity include a high level of awareness of the environment and an ability to discriminate or attend to detail.
Individuals who engage in Sensation Avoiding behaviors are overwhelmed or bothered by sensory stimuli. Consequently, sensation avoiders actively engage with their environments to reduce sensory stimuli. Advantages of Sensation Avoiding include the ability to create structure in environments that provide limited sensory stimuli, as well as a tolerance or enjoyment of being alone.
The diagnosis
I went back to see Katherine a few weeks after the main session, where she gave me the outcome verbally, and advised that I'd get a full report in due course.The cut off for an ASD diagnosis (in the ADOS 2) is evidently 8, with 12 the cut off for what would be formally termed ‘autism’ (the difference between autism and ASD is evidently a matter only of degree of severity of symptoms, rather than different symptoms). I scored 11. So I’m actually slightly weirder than I thought. Having reached 50 without a diagnosis and given that I’m holding down a reasonable job, I hadn’t necessarily expected to get a diagnosis of any sort.
Things that I hadn’t realised about myself, that are evidently consistent with ASD – but they’re the sorts of things you’d need someone else to point out:
- Relatively monotonic speech;
- Speech formal and precise;
- Limited range of facial expressions;
- Erratic eye contact
Things that I did think, after a bit of reading up, were probably indicative, though the possibility wouldn’t have occurred to me until the IAPT service pointed it out:
- Rather extreme dislike of changes of plan. (An example: I may have planned to leave the house hours early in order to take my time getting somewhere, not have to talk to anyone and have some time to recoup at the other end. Some jolly person might then suggest ‘Let’s leave three hours later than you’d planned and ALL GO TOGETHER’. Mental shutdown and possibly tears may result.);
- Go to some lengths to avoid crowds and noise;
- Find more than one person talking at once excessively jarring;
- Struggle when there are several people talking at once to pick out the strand of conversation, sometimes as if I had a hearing problem – except that I don’t;
- Occasional what might be termed in autism-speak ‘meltdowns’ where I lose verbal capacity;
- Extreme irritation with people who don’t follow the rules and/or act logically (though ‘logically’ may well translate as ‘how I think they ought to’)
There are a few others, which I’m not going to relate here in case they interfere with the more-or-less normal persona I like to present. Some of the ones I have listed should hopefully help to explain my decision not to bear children.
An additional view is that highly intelligent people can compensate for difficulties due to ASD by watching and learning from others and then applying. For obvious reasons, I rather like this one. The idea of performance in social situations having to be ‘learned’ makes some intuitive sense. Becoming more adept in social situations with age – as I certainly have – is also consistent, though I’d guess that’s not uncommon among the population in general.
Some musings
- Asperger syndrome. There appears to be greater prestige attached by some individuals to a diagnosis of Asperger syndrome rather than autism (I’ve seen this termed ‘Aspie superiority’). My guess is that the term ‘Aspergers’ is associated more with brainy maths boffins and less with uncontrollable nonverbal children, so carries more appeal for your average adult of normal intelligence. It strikes me that it’s used as something of a proxy for ASD sufferers of normal-high intelligence, to distinguish them from other types. It’s no longer a diagnosis in the diagnostic framework that The Practice MK uses (the DSM-5), I gather because it was decided that it didn’t differ from other autism spectrum conditions enough to merit a whole separate name. I’m sure I’ve also seen it noted somewhere that the symptoms of Asperger syndrome were noted based solely on observations of men. Which leads on to:
- Sex differences in rates of ASD/diagnoses of ASD. The view nowadays seems to be that women and girls are under-diagnosed, and that a female with the same degree of autistic symptoms as a male will often mask them better, possibly because of social conditioning that makes girls and women more concerned to fit in with their peers. That sounds potentially plausible, and I’d also perhaps add, less likely to be of a mindset that thinks they’re perfectly OK as they are so don’t need to change anything. I’m being slightly tongue-in-cheek on the latter bit, but I do think there’s something in both of those points. There’s a NAS page on ‘gender and autism’ – though it unfortunately branches off into talking about ‘gender identity’ which is a whole other can of worms. This page, though, is quite good, particularly the piece “How the public misunderstand autistic women” where some of the writer’s experiences chime with me. Also this is good, especially the bit ‘Girls blend in’. Also this.
- Involvement of parents. As a middle-aged adult, this can be difficult for a number of reasons. One obvious one is that although I am lucky enough to have both parents still living, this isn’t going to be the case for every 50-something. Another more nuanced issue is how much frank use they would be if you took them along. This is partly due to what I suspected would be my mother’s (probably natural) reluctance to remember anything from my childhood as symptomatic of anything other than shyness, and partly because – not wanting to upset her – I would have been reluctant to remind her of specific behaviours and incidents which it’s pretty clear to me now did indicate autistic tendencies, but which she might not care to (or perhaps be able to) recall. Thankfully The Practice MK is geared towards diagnosing adults and didn’t require this. Not being a parent myself this is only speculation, but I’d guess that this sort of thing is difficult for parents as they have so much invested in the health and ‘normality’ of their children – or certainly for people of my parents’ generation; being diagnosed with this sort of stuff is a lot more familiar nowadays.
- Savant syndrome. I wish. Rain Man has a lot to answer for. The term ‘autistic savant’ is no longer current as apparently only about half of cases of savant syndrome are also reckoned to be autistic, and SS itself is incredibly rare. It’s a nice thought, but no.
- Great ability in maths, computer hacking etc. I was moderately good at maths at school – as in, I passed my O-level with a reasonable grade – but certainly no genius. Coding – now there’s something I do wish I’d been exposed to at school, but in my day (the 1980s) computer programming classes were a) much harder to access; b) dominated by boys of a particularly irritating know-it-all bent, if my school was anything to go by (it’s highly unlikely Simon Lyons and Nicholas Andrews are reading this blog, but I’ll refrain from naming them just in case. Oh. Whoops.). Thankfully for the sake of today’s girls, things have changed.
- The view that We’re All On The Spectrum. I have some sympathy with this up to a point, as certain individual autistic traits have become well known (though several, like the supposed lack of empathy, are widely misinterpreted) and autism/ASD has acquired such a much higher profile over the last 20 years or so that it can seem as though everyone’s being diagnosed with it. Indeed, it can seem as though every second family has at least one autistic child, though obviously that’s not the case in reality. It’s much the same thing as saying “he’s a bit OCD”, in that it reflects a layman’s perception of what being OCD involves. (Just to clarify: ‘the spectrum’ refers to the spectrum of severity of symptoms displayed by people diagnosable with an autistic condition, not by everyone in the world.)
Reactions from others
I’ve spoken about it directly with comparatively few people but generally, I’d say reaction of mild surprise but openness to the idea. Only one mildly irritating reaction, from a former colleague who launched into a speech about a former boss of hers at the OU who was DEFINITELY (in her view) ‘on the spectrum’ and who later challenged something I said with “Aha, but you’re not supposed to have empathy, are you?”.The only quarter where there seems to have been no surprise whatsoever was Ray and his family. Before I got the official diagnosis, Ray said that he didn’t reckon there was any doubt about it, while his sister – the mother of the teen mentioned in the next section – evidently reacted to news of my diagnosis with something along the lines of “Well, duh”. Suspect it helps that they have direct experience of an autistic female themselves.
Late diagnosis
Was it worth going for an ASD assessment at 50? I’d say unequivocally yes – it’s mildly annoying that I had to pay for it in order to speed things up, but with hindsight I don’t begrudge the money.It’s difficult not to have some envy for today’s youth whose ASD was spotted early on. One of Ray’s nieces, now in her mid-teens, was diagnosed in infants school and has attended ASD support groups from a young age and apparently has a support worker at her secondary school to whom she can go with any worries. By all accounts she seems to have turned out pretty well-adjusted, has some friends and has just taken her GCSEs.
But it’s highly unlikely I would have got a diagnosis as a child even if my parents had been concerned enough to have asked questions of professionals. My understanding from reading is that before the diagnostic criteria were widened and autism was re-classified as a spectrum condition, it would only have been children and young people with severe symptoms and, most likely, comorbid conditions (and most likely boys) who would have been diagnosed. This has it that the DSM-IV was the first version of the DSM to classify autism as a spectrum, and the DSM-IV was released in 1994, by which time I was 26.
Any annoyance surrounding my late diagnosis is directed mainly at the sequence of – in the main - half-arsed counsellors I’ve seen over the years, particularly those I’ve seen more recently when ASD was reasonably in the public consciousness. I’d seriously like to know what the hell qualifications most of them possess. After giving me my diagnosis, Katherine noted that some counselling might be helpful to assist me in processing it, but stressed that if I went for any more counselling, it should be with a counsellor who has experience of counselling people on the autism spectrum – the differences are I believe including around how questions should be phrased, etc. Of course, that meant that the easiest thing for me to do was to see one of The Practice’s own counsellors (they offer other services besides autism assessments) so it may have been in part a way of drumming up business for her own practice, but I have to say that the girl-woman with whom I’ve now had a number of sessions is one of a VERY small number of the counsellors I’ve seen whom I haven’t wanted to punch in the face. Which is a good start.
