Module 4 — What You Will Be Asked, and How to Prepare

 

The questions an assessment is actually built out of, the informant problem and what to do when there is nobody to ask, and how to prepare thoroughly without turning the appointment into a performance.

 

The Assessment · Part Two — The process

 

The big idea

 

Short on capacity today? The big idea: Part One was about choosing. From here the course is about the process itself, and this module is the one that changes your outcome most, because it is the only part of the assessment you can do work on in advance.

 

That work has a shape, and the shape is counter-intuitive. You are preparing facts, not answers. An assessor is not waiting for you to make the case. They are trying to get a life described precisely enough that they can weigh it — and the more precisely you can describe it, the less of the judgement rests on how you happened to come across on the day.

 

The failure mode is the opposite of not preparing. It is preparing so hard that you arrive with a performance.

 

Step 1 — The lesson

 

A. What actually happens

 

The specifics vary by service; the components barely vary at all, because two clinical guidelines describe them in almost the same terms.

 

For ADHD, the English guideline says a diagnosis must rest on a full clinical and psychosocial assessment, and it lists what that includes: discussion about behaviour and symptoms in the different domains and settings of the person’s everyday life, a full developmental and psychiatric history, observer reports, and assessment of the person’s mental state. It adds — and this is worth carrying into the appointment — that a diagnosis should not be made solely on the basis of rating scale or observational data.

 

For autism in adults, the parallel guideline lists what a comprehensive assessment must enquire about: core autism features “that have been present in childhood and continuing into adulthood”; early developmental history, where possible; behavioural problems; functioning at home, in education or in employment; past and current physical and mental disorders; other neurodevelopmental conditions; and hyper- or hypo-sensory sensitivities and attention to detail. It then instructs the assessor to carry out direct observation of core autism features, especially in social situations.

 

It also requires them to assess for differential diagnoses and co-occurring conditions — other neurodevelopmental conditions, mental disorders such as depression, anxiety, social anxiety and obsessive–compulsive disorder, neurological conditions such as epilepsy, physical conditions, communication difficulties, sensory sensitivities. This is Module 1’s differential, written into guidance as a requirement. When an assessor asks about your sleep, your thyroid, your drinking or your worst year, they are not being nosy. They are doing the part you cannot do for yourself.

 

Two more things that guidance requires and readers rarely expect. Assessors are told to assess risk — self-harm, self-neglect, harm to others, exploitation, the breakdown of support. And they are told not to use biological tests, genetic tests or neuroimaging routinely for diagnostic purposes. If a service is selling you a scan, that is not the mainstream of this field.

 

Practically, expect: questionnaires before or between appointments; one or more long interviews; questions to somebody who knows you, if that is possible; and observation running quietly throughout. The NHS’s own description of an adult assessment lists exactly that shape, including speaking to someone who knew you as a child and to someone who knows you now.

 

Diagram — A · A wall of ordinary stones. The specifics vary by service; the components barely vary at all, because two clinical guidelines describe them in almost the same terms. For ADHD, the English guideline says a diagnosis must rest on a full clinical and psychosocial assessment, and lists what that includes: discussion about behaviour and symptoms in the different domains and settings of the person's everyday life, a full developmental and psychiatric history, observer reports, and assessment of the person's mental state. It adds — and this is worth carrying into the appointment — that a diagnosis should not be made solely on the basis of rating scale or observational data. For autism in adults, the parallel guideline lists what a comprehensive assessment must enquire about: core autism features that have been present in childhood and continuing into adulthood; early developmental history, where possible; behavioural problems; functioning at home, in education or in employment; past and current physical and mental disorders; other neurodevelopmental conditions; and hyper- or hypo-sensory sensitivities and attention to detail. It then instructs the assessor to carry out direct observation of core autism features, especially in social situations. It also requires them to assess for differential diagnoses and co-occurring conditions — other neurodevelopmental conditions, mental disorders such as depression, anxiety, social anxiety and obsessive-compulsive disorder, neurological conditions such as epilepsy, physical conditions, communication difficulties, sensory sensitivities. That is Module 1's differential, written into guidance as a requirement. Two more things guidance requires and readers rarely expect: assessors are told to assess risk — self-harm, self-neglect, harm to others, exploitation, the breakdown of support — and they are told not to use biological tests, genetic tests or neuroimaging routinely for diagnostic purposes. If a service is selling you a scan, that is not the mainstream of this field. Practically, expect questionnaires before or between appointments, one or more long interviews, questions to somebody who knows you if that is possible, and observation running quietly throughout.

 

B. Developmental history: the part nobody arrives ready for

 

Both conditions are developmental. That is not a technicality, it is the definitional feature: the criteria require the pattern to have been present early, not to have begun in your thirties. So the assessment reaches backwards, and it reaches further back than most people expect.

 

Which raises the obvious problem. You were not taking notes at seven.

 

Look closely at how the autism guideline words its requirement: “early developmental history, where possible.” Three words doing a great deal of work. The guideline that governs adult assessment in England anticipates, in its own text, that early developmental history may not be obtainable — and does not make it a precondition. Note that carefully now; section D returns to it.

 

What is being asked for, concretely, is not a narrative. It is:

 

• What you did, at particular ages, in particular settings.
• Where it showed up — home, school, work, friendships, relationships. More than one setting is part of both criterion sets.
• What it cost. The criteria ask about impairment, and impairment is the thing people systematically under-report, because a difficulty you have carried since childhood does not feel like a difficulty. It feels like Tuesday.
• What changed and when — the years that were easier, the job that worked, the point things came apart.

 

C. Why your own memory is not the evidence

 

This has been measured, the results are not comfortable, and Self-Identification Module 4 sets it out in full — the longitudinal study of children reassessed as young adults, the sixteen-year prospective follow-up that put a number on how much a retrospective self-report is worth, and the study of parents interviewed twice about the same child’s early development several years apart. Read it there rather than here: 08 - Self-Identification, Module 4, Reading Your Own History. It also contains the method — how to build a two-column document, how to ask an informant without leading them, and how to write the counter-case.

 

Three sentences are enough to carry forward:

 

Recall of childhood is poor in everyone, and it bends towards whatever you currently believe about yourself. It is equally poor in the people who remember you differently, so “I never noticed that” carries no more weight than your own account does. The answer to bad memory is not better memory — it is anything that is not memory.

 

Everything in sections D and E follows from that one sentence.

 

Diagram — B · The stick is straight. Both conditions are developmental. That is not a technicality, it is the definitional feature: the criteria require the pattern to have been present early, not to have begun in your thirties. So the assessment reaches backwards, and further back than most people expect — which raises the obvious problem, because you were not taking notes at seven. What is being asked for, concretely, is not a narrative. It is what you did, at particular ages, in particular settings; where it showed up, at home, school, work, in friendships and relationships, because more than one setting is part of both criterion sets; what it cost, since the criteria ask about impairment and impairment is the thing people systematically under-report, because a difficulty you have carried since childhood does not feel like a difficulty, it feels like Tuesday; and what changed and when — the years that were easier, the job that worked, the point things came apart. As for your own memory: this has been measured, the results are not comfortable, and Self-Identification Module 4 sets it out in full, including the longitudinal study of children reassessed as young adults, the sixteen-year prospective follow-up that put a number on how much a retrospective self-report is worth, and the study of parents interviewed twice about the same child's early development several years apart. Three sentences are enough to carry forward. Recall of childhood is poor in everyone, and it bends towards whatever you currently believe about yourself. It is equally poor in the people who remember you differently, so I never noticed that carries no more weight than your own account does. And the answer to bad memory is not better memory — it is anything that is not memory.

 

D. The informant question — and what to do when there is nobody

 

An informant is somebody who watched you from outside: a parent, a sibling, a partner of many years, a friend who has known you since school. Services ask for one because self-report and outside observation are genuinely different measurements, not two goes at the same one.

 

How different has been measured. In a study at a specialised adult autism diagnostic service, 110 adults completed a repetitive-behaviours questionnaire about themselves while a relative or long-term friend completed the informant version about them. Self and informant scores correlated substantially — 0.71 on the total score, 0.69 to 0.72 on the subscales — which is close enough to show they are seeing the same person, and far enough from perfect to show they are not seeing the same thing.

 

Now the finding that matters most if your informant is unenthusiastic.

 

A Dutch study evaluated a brief informant-based diagnostic interview for adults — 62 autistic participants and 30 non-autistic comparisons, mean administration time 42 minutes. Against a clinical diagnosis, the informant interview reached 80.6 per cent sensitivity and 93.3 per cent specificity. Its positive predictive value was 96.2 per cent. Its negative predictive value was 70.0 per cent.

 

Read those last two numbers side by side, because they are the whole informant question in one line. When an informant’s account supports autism, that is very strong evidence. When an informant’s account does not, that is much weaker evidence — in that sample, wrong nearly a third of the time.

 

Diagram — C · They looked in the front window. An informant is somebody who watched you from outside: a parent, a sibling, a partner of many years, a friend who has known you since school. Services ask for one because self-report and outside observation are genuinely different measurements, not two goes at the same one. How different has been measured. In a study at a specialised adult autism diagnostic service, 110 adults completed a repetitive-behaviours questionnaire about themselves while a relative or long-term friend completed the informant version about them. Self and informant scores correlated substantially — 0.71 on the total score, 0.69 to 0.72 on the subscales — which is close enough to show they are seeing the same person, and far enough from perfect to show they are not seeing the same thing. Now the finding that matters most if your informant is unenthusiastic. A Dutch study evaluated a brief informant-based diagnostic interview for adults: 62 autistic participants and 30 non-autistic comparisons, mean administration time 42 minutes. Against a clinical diagnosis, the informant interview reached 80.6 per cent sensitivity and 93.3 per cent specificity; its positive predictive value was 96.2 per cent and its negative predictive value was 70.0 per cent. Read those last two numbers side by side, because they are the whole informant question in one line. When an informant's account supports autism, that is very strong evidence. When an informant's account does not, that is much weaker evidence — in that sample, wrong nearly a third of the time. Your mother doesn't remember it that way is information. It is not a finding. If you have no informant at all — and a great many adults do not, through bereavement, estrangement, adoption, distance, or because the honest answer is that it would not be safe to ask — say so early and in writing when you book rather than on the day, offer the informant you do have, substitute paper for people, and know that the guideline is on your side: early developmental history, where possible. A service that treats the absence of a parent as disqualifying is applying a stricter rule than the guidance does, and you are entitled to ask them about it.

 

“Your mother doesn’t remember it that way” is information. It is not a finding.

 

If you have no informant — and a great many adults do not, through bereavement, estrangement, adoption, distance, or because the honest answer is that it would not be safe to ask — here is what to do.

 

• Say so early, in writing, when you book. Not on the day. It changes how the service plans the assessment and it is a fair question to ask them: what do you do when there is no informant, and what weight do you place on one?
• Offer the informant you do have. The 110-adult study above used a relative or long-term friend, not necessarily a parent, at a specialist adult service. A partner of fifteen years, a friend from school, a sibling, a former colleague — all of these are informants. The person who knew you at seven is ideal, not obligatory.
• Substitute paper for people. Documents written at the time by somebody with no stake in this question outrank anybody’s memory, including a parent’s. That is section E.
• Know that the guideline is on your side. “Early developmental history, where possible.” A service that treats the absence of a parent as disqualifying is applying a stricter rule than the guidance does, and you are entitled to ask them about it.

 

One more practical point, from Self-Identification Module 4 and worth repeating in one line: ask an informant open questions before specific ones, and do not tell them what you are looking for until afterwards. A leading question returns the answer you implied, and an assessor can usually tell.

 

E. What to gather, and how to prepare without rehearsing

 

The pack. Aim for a slim, dated, boring document set. Order the paper first — some of it takes weeks to arrive.

 

• School reports and records. The free-text comments, not the grades. The same phrase from different teachers in different years is evidence of persistence across time and setting.
• Work appraisals, reviews, disciplinary or capability letters. The adult equivalent, usually more specific.
• Medical records, including the diagnoses that did not fit and the treatments that did nothing. Assessors want the misfires; they are differential-diagnosis evidence.
• Any previous assessment or report — educational, psychological, occupational health — even if it concluded something else. Especially if it concluded something else.
• A current medication and substance list, honestly. Sleep, alcohol, caffeine, everything.
• Your screener scores, with dates, if you have taken any. Two lamps, as Module 1 put it: a starting point, not a finish line.
• A one-page list of concrete examples, dated, each in the form what I did, how often, for how long, what it cost. No diagnostic vocabulary at all.
• A short written note of what you cannot say out loud, if there is any. Handing over a piece of paper is a legitimate way to answer a question.
• Your list of adjustments for the assessment itself — see below.

 

Send what you can in advance. Reading time is cheaper than appointment time, and a document the assessor has already read produces better questions.

 

Now the rehearsing problem.

 

Observation is running through the whole assessment — the autism guideline explicitly requires direct observation of core features, especially in social situations. So the hour in which you are being observed is the hour in which a lifetime of learned masking is most likely to switch on, and rehearsing is masking practice. Prepare a script and you will deliver it fluently, and fluency is one of the things being looked at.

 

The distinction that resolves this:

 

Prepare the facts. Do not prepare the delivery. A dated list of things that happened is preparation. A rehearsed sentence about what those things mean is a performance.

 

Diagram — D · Sanded until the grain is gone. Observation is running through the whole assessment — the autism guideline explicitly requires direct observation of core features, especially in social situations. So the hour in which you are being observed is the hour in which a lifetime of learned masking is most likely to switch on, and rehearsing is masking practice: prepare a script and you will deliver it fluently, and fluency is one of the things being looked at. The distinction that resolves this is one line. Prepare the facts. Do not prepare the delivery. A dated list of things that happened is preparation; a rehearsed sentence about what those things mean is a performance. Four rules follow. Write examples, not conclusions — I ate lunch in the library every day for three years, not I have always struggled socially — and let the assessor draw the inference, which is the job you are paying them for. Do not study the criteria in order to match them: search forty years for confirmation and you will find it; if you have already read the criteria closely that is fine and not a disqualification, but balance it by spending a deliberate half-hour on what does not fit, and take that list with you. Do not try to mask, and do not try to un-mask, because both are performances — and if you notice yourself doing either, say so out loud, because I am making eye contact on purpose right now and it is costing me is not a confession, it is exactly the kind of data an assessor cannot get any other way. And let the bad day be a bad day: if you slept badly, say so; if the questions are exhausting, say so and ask for a break, because an assessment conducted through a fog you concealed is an assessment of the fog. Adjustments are not a favour either. The autism guideline instructs services to take the assessment environment into account and adapt it, naming personal space of at least an arm's length, visual supports, wall and furnishing colour, lighting and noise levels, and where the environment cannot be adapted, to vary the duration or nature of the assessment, including taking regular breaks.

 

Four rules that follow:

 

1. Write examples, not conclusions. “I ate lunch in the library every day for three years”, not “I’ve always struggled socially.” Let the assessor draw the inference — that is the job you are paying them for.
2. Do not study the criteria in order to match them. Self-Identification Module 4 explains why at length: search forty years for confirmation and you will find it. If you have already read the criteria closely, that is fine and it is not a disqualification. Balance it by spending a deliberate half-hour on what does not fit, and take that list with you.
3. Do not try to mask, and do not try to un-mask. Both are performances. If you notice yourself doing either, say so out loud: “I’m making eye contact on purpose right now and it’s costing me.” That sentence is not a confession. It is exactly the kind of data an assessor cannot get any other way.
4. Let the bad day be a bad day. If you slept badly, say so. If the questions are exhausting, say so and ask for a break. An assessment conducted through a fog you concealed is an assessment of the fog.

 

Adjustments are not a favour. The autism guideline instructs services to take the assessment environment into account and adapt it — naming personal space of at least an arm’s length, visual supports, wall and furnishing colour, lighting, and noise levels — and where the environment cannot be adapted, to vary the duration or nature of the assessment, including taking regular breaks. Asking for the questions in writing beforehand, for breaks, for a camera off, for a support person present, or for a shorter session across more appointments is asking for something the guidance already tells them to consider.

 

→ The module this one keeps deferring to, for the recall evidence in full and the two-column method, is Self-Identification, Module 4.

 

Diagram — E · Settled, and shaken. One: start the paper trail today, before you do any thinking. School records and medical notes can take weeks, so request them now and do the reflective work while you wait — and in that order, because thinking hard about a question changes how you remember it. Two: build the one-page example sheet and keep the long version underneath. Dated, specific, no diagnostic language, one line each; the long version is for you and the one-pager is the thing that actually gets read. Three: ask your informant open questions first, and ask more than one person — what was I like at seven, before was I always losing things — and where two accounts diverge, the gap is information rather than a problem to fix. Do not tell an informant what you are looking for until afterwards, because a leading question returns the answer you implied and an assessor can usually tell. Four: if there is no informant, say so when you book, not on the day, and ask the service directly what they do without one and how much weight they place on it. Guidance says early developmental history where possible; hold them to the whole phrase. Five: write your adjustments list before anyone asks for it — breaks, lighting, questions in advance, a support person, a written way to answer — and send it with your booking, because a service's response to that list tells you a great deal about the service. Six: write down what you will not be able to say out loud and take it on paper. Most people have one or two of these, and handing over a note is a legitimate way to answer, better than a silence the assessor has to interpret. Seven: read Self-Identification Module 4 before your first appointment. It is the method for everything in sections C to E, with the evidence on recall set out in full, and this module assumes it rather than repeating it. The pack itself should be slim, dated and boring: school reports and records for the free-text comments rather than the grades, work appraisals and capability letters, medical records including the diagnoses that did not fit and the treatments that did nothing, any previous assessment even — especially — if it concluded something else, a current medication and substance list, your screener scores with dates, the one-page list of concrete examples, and the short written note of what you cannot say out loud. Send what you can in advance: reading time is cheaper than appointment time, and a document the assessor has already read produces better questions.

 

F. What helps

 

1. Start the paper trail today, before you do any thinking.

 

School records and medical notes can take weeks. Request them now and do the reflective work while you wait — and in that order, because thinking hard about a question changes how you remember it.

 

2. Build the one-page example sheet, and keep the long version underneath.

 

Dated, specific, no diagnostic language, one line each. The long version is for you; the one-pager is the thing that actually gets read.

 

3. Ask your informant open questions first, and ask more than one person.

 

“What was I like at seven?” before “was I always losing things?” Where two accounts diverge, the gap is information, not a problem to fix.

 

4. If there is no informant, say so when you book — not on the day.

 

And ask the service directly what they do without one, and how much weight they place on it. Guidance says early developmental history where possible. Hold them to the whole phrase.

 

5. Write your adjustments list before anyone asks for it.

 

Breaks, lighting, questions in advance, a support person, a written way to answer. Send it with your booking. A service’s response to that list tells you a great deal about the service.

 

6. Write down what you will not be able to say out loud, and take it on paper.

 

Most people have one or two of these. Handing over a note is a legitimate way to answer, and it is better than a silence the assessor has to interpret.

 

7. Read Self-Identification Module 4 before your first appointment.

 

It is the method for everything in sections C to E, with the evidence on recall set out in full. This module assumes it rather than repeating it.

 

Module 5 goes through the instruments themselves — what each one measures, who fills it in, and why no single one of them is required.

 

Up next

 

Module 5 — The Instruments You Are Likely to Meet

 

All modules in The Assessment