Introduction
Methods
Participants
Parents/Carers
Parent/carer and autistic individual demographics | |
---|---|
Autistic individual mean age in years (SD), range | 19.2 (11.3), 7–52 |
Autistic individual gender | |
Male, n (%) | 18 (85.7) |
Female, n (%) | 3 (14.3) |
Diagnosis | |
Autism, n (%) | 21 (100) |
Parent/carer gender | |
Male, n (%) | 1 (4.8) |
Female, n (%) | 20 (95.2) |
Parent/carer mean age (SD), range | 50.5 (7.2), 37–66 |
Relationship to autistic individual | |
Mother, n (%) | 19 (90.5) |
Father, n (%) | 1 (4.8) |
Sibling, n (%) | 1 (4.8) |
Household income | |
Less than £15,000, n (%) | 1 (4.8) |
£15,001 to £25,000, n (%) | 3 (14.3) |
£25,001 to £35,000, n (%) | 5 (23.8) |
£35,001 to £45,000, n (%) | 3 (14.3) |
£45,001 to £55,000, n (%) | 1 (4.8) |
£55,001 to £65,000, n (%) | 3 (14.3) |
£65,000 or more, n (%) | 4 (19) |
Not provided, n (%) | 1 (4.8) |
Highest level of parent/carer education | |
No formal qualifications, n (%) | 1 (4.8) |
Fewer than five GCSEs or O-levels, n (%) | 0 (0) |
Five or more GCSEs or O-levels, n (%) | 2 (9.5) |
Three or more A-levels, n (%) | 2 (9.5) |
University degree, n (%) | 6 (28.6) |
Masters or Doctoral degree, n (%) | 6 (28.6) |
Wessex | |
Never a word, n (%) | 6 (28.6) |
Odd words only, n (%) | 15 (71.4) |
Mean self-help score (SD), rangea | 6.4 (1.1), 4–9 |
SCQ mean score (SD), rangeb | 23.9 (5.7), 13–31 |
ADAMSc mean scores (SD), range | |
General anxietyd | 11.6 (4.1), 5–20 |
Social avoidance | 10.4 (4.4), 2–19 |
Depressed | 4.5 (2.6), 0–8 |
Manic/hyperactivee | 10.4 (3), 3–14 |
Compulsive behaviourf | 5.8 (2.6), 0–9 |
Anxiety frequencyg | |
Never, n (%) | 0 (0) |
At least once a month, n (%) | 4 (19) |
At least once a week, n (%) | 7 (33.3) |
At least once a day, n (%) | 8 (38.1) |
At least once an hour, n (%) | 1 (4.8) |
Anxiety severity | |
Mild, n (%) | 1 (4.8) |
Moderate, n (%) | 7 (33.3) |
Severe, n (%) | 13 (61.9) |
Clinicians
Clinician participant demographics | |
---|---|
Gender | |
Female | 6 |
Male | 3 |
Clinician role | |
Clinical Psychologist | 2 |
Community Learning Disability Nurse | 2 |
Clinical Nurse Specialist | 2 |
Consultant Paediatric Neuropsychiatrist | 1 |
Consultant Paediatric Liaison Psychiatrist | 1 |
Consultant Community Paediatrician | 1 |
Procedure
Parents/Carers
Parent/carer interview question examples |
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Can you describe a recent example or period of time when (X) showed this anxiety? |
When (X) feels anxious, how do they behave during this time? |
Does the onset of anxiety seem to be linked to any triggers or causes? |
Example question prompts |
Do you see any physical changes in their bodies? |
Do you see changes in how the person moves? |
Do you see any changes in their face? |
Have you noticed any patterns when anxiety occurs? |
Clinicians
Clinician interview question examples |
---|
When you are assessing anxiety, are there specific things you look for in minimally verbal people? |
When you are assessing anxiety in minimally verbal people, how do you differentiate this from other diagnoses, such as pain or autism spectrum disorder? |
Do you ever think anxiety is diagnosed incorrectly, or overlooked? What leads to this? |
Example question prompts |
Do you see any physical changes in their bodies? |
Do you see changes in how the person moves? |
Are there particular behaviours that are shown that cause confusion? |
Measures
The Wessex Questionnaire
Social Communication Questionnaire
Anxiety, Depression and Mood Scale
Data Analysis
Content Analysis to Describe Anxiety Presentation
Behaviours associated with anxiety | Number of parents with code (%) [n/% child] | Number of clinicians with code (%) | Example codes | Quote example from parent/carer | Quote example from clinician |
---|---|---|---|---|---|
Low order repetitive behaviour or stimming | 10 (47.6) [3/30] | 3 (33.3) | Hand flapping, rocking, bouncing | “there’s a rocking… it’s not sort of calm rocking, it’s distressed rocking” | “stereotypical behaviours, rocking” |
Higher order repetitive behaviours or OCD-like behaviours | 10 (47.6) [4/40] | 4 (44.4) | Closing windows and doors, wanting thing straight | “much more needing to control the environment around him” | “trying to exert control over the environment… insisting on having certain things a certain thing” |
Repetitive speech/asking | 12 (57.1) [7/58.3] | 1 (11.1) | “home, home, home”, “no, no, no” | “repetitive asking, requesting” | “even those with very low verbal skills might repeat whatever word they do know over and over again” |
Avoidance/refusal patterns | 19 (90.5) [8/42.1] | 9 (100) | Running away from something, not wanting to get out of car, hide behind arm, need to flee | “he would perhaps try to run away” “his only way to express what he is feeling is to refuse to cooperate” | “tried to run away” |
Freezing/rooted to the spot | 4 (19) [1/25] | 0 (0) | Won’t move from spot, physically getting stuck | “he will plant himself… he will almost be quite rooted to the spot” | N/A |
Withdrawal/reduced vocalisation/shutting down | 12 (57.1) [6/50] | 7 (77.7) | Reduced ability to communicate, quiet, withdraws | “he internalises when he’s anxious about something… he doesn’t say it, he will just kind of step back” | “they might just absolutely go in themselves and just not want to communicate with the world” |
Increased vocalisation/communication | 20 (95.2) [9/45] | 8 (88.8) | Shouting, screaming, crying, groaning, moan, grumble, whimper | “he will shout out or maybe scream… where you hear a groan noise, like a low rumble noise” | “an increase in cry-like sounds and a grunting or just any type of negative vocalisations” |
Facial expression/change | 17 (81) [8/47.1] | 6 (66.6) | Frown, grimace, blank, tense, worried, tighten lips | “you can see it in her face, she looks anxious and agitated, sort of tense” | “you can see from their facial expression that they’re concerned and they’re not at ease” |
Body changes/movement | 18 (85.7) [8/44.4] | 6 (66.6) | Tense body, pacing, sweating, trembling, shaking, breathing changes, rigid | “his heart is pounding, he’s profusely sweating” “he’ll start pacing up and down the room” | “increased sweating, increased heart rate, increased breathing” |
Behaviours that challenge | 19 (90.5) [9/47.4] | 9 (100) | Hitting, biting, pushing, kicking self or others, throwing or damaging things | “bites his hand or he hits his head” “he will kick things… doors, walls, windows” | “an increase in self-injury or an increase in aggression or destruction” |
Proximity seeking | 9 (42.9) [3/33.3] | 2 (22.2) | Clinging, following, touching, holding onto others | “he started to become a bit clingy… he would stick to somebody like glue” | “apparent increased need or wanting of attention from the main caregiver” |
Hypervigilance | 3 (14.3) [0/0] | 0 (0) | Looking around, watching, on edge | “she’s really honing in, you can see her… she’s watching around… she can’t focus on what to eat because she’s too worried about the environment” | N/A |
Change in overall demeanour | 14 (66.7) [7/50] | 6 (66.6) | Agitated, frustrated, not so relaxed | “I can pick up from her tension. You can just tell. She’s not as relaxed” | “he becomes agitated”, “just a general change in mood” |
Change in everyday behaviour/skills | 4 (19) [1/25] | 2 (22.2) | Regression in skills, defecating, wetting, vomiting | “when his anxieties are high all that goes out the window, his communication goes back to where it was all those years ago” | “regression as well in skills, so maybe being less functionally able or appearing that way” |
Covers ears | 3 (14.3) [2/66.7] | 0 (0) | Puts hands/sticking fingers in ears | “he will put his hands over his ears, he wants to sort of separate himself” | N/A |
Hyperactivity | 7 (33.3) [4/57.1] | 4 (44.4) | Unable to sit down/sit still, climbing, on the go | “be unable to sit down, sit still, he’d be constantly climbing, constantly on the go” | “you can often see that they can’t settle… they’re circling the room” |
Changes in food habits | 8 (38.1) [2/25] | 5 (55.5) | Won’t eat, regurgitation, eating too quickly | “has an impact on how he eats, because he eats too quickly or too slowly” “he won’t eat anything” | “you’ve got to consider appetite… either overeating maybe or not eating enough” |
Changes in sleep habits | 3 (14.3) [0/0] | 4 (44.4) | Couldn’t sleep, scared to sleep | “he was scared to go to sleep” | “somatic changes are indicators of anxiety… sleep disturbance” |
Covering self | 2 (9.5) [0/0] | 0 (0) | Wrap/cover self in curtain, jumper, blanket | “he then covers himself up with a jumper, or a blanket, or a cushion” | N/A |
Biting scarf | 1 (4.8) [0/0] | 0 (0) | “she always wears a scarf so she can bite into the scarf” | N/A | |
Drawing | 1 (4.8) [0/0] | 0 (0) | “he spends a lot of time drawing things and he will repeat he’ll like create an exercise book out of sheets of paper and do about 40 drawings of a van” | N/A | |
Non-epileptic seizure presentation | 1 (4.8) [0/0] | 0 (0) | Crawl around, lie down, shaking, trembling, can’t walk, eyes flicker | “her anxiety manifests itself as what we think are what are called non-epileptic seizures… she’s physically incapacitated whilst that is going on” | N/A |
Anxiety trigger | Number of parents with code (%) [n/% child] | Number of clinicians with code (%) | Examples | Quote example from parent/carer | Quote example from clinician |
---|---|---|---|---|---|
Fear of what other’s think/getting into trouble/upsetting others | 4 (19) [2/50] | 0 (0) | Very sensitive to being liked, thinks he’s being told off | “he thinks he’s done something wrong, he thinks he’s being told off” | N/A |
Communication frustration/difficulty | 7 (33.3) [5/71.4] | 2 (22.2) | Can’t always communicate needs, she really wants to communicate | “sometimes she really wants to communicate and she can’t really communicate, I think she can probably understand more than she can voice” | “frustration around not being able to communicate his needs effectively” |
Unpredictability/uncertainty | 16 (76.2) [5/31.3] | 7 (77.8) | Not knowing what’s happening, doesn’t understand, dogs, young children, cats | “I think it’s the unpredictability of the outside world that feeds his anxiety” | “not really knowing what’s happening, what the plan is for them, in terms of the day and things” |
New/unfamiliar situations or people | 10 (47.6) [4/40] | 3 (33.3) | New teachers, students, unfamiliar children or adults, new staff, lack of trust | “new experiences cause her huge anxiety” “anybody that is new that he doesn’t know” | “new member of staff started working with this person…we started seeing an increase in behaviour” |
Needs not being met | 11 (52.4) [6/54.5] | 4 (44.4) | Not having enough support, not able to do something that he wants to do | “he didn’t feel supported, they didn’t understand him” | “coming towards the end of primary when perhaps the child might have outgrown or the schools no longer meeting their needs” |
Demands/not meeting demands | 10 (47.6) [5/50] | 5 (55.6) | If he doesn’t want to do something, social demand, questions, choices | “whether it is demand of an interaction…a task…to do something that wasn’t quite on his agenda at that moment” | “the expectations of them are massive because they’re in college and just getting people to strip back and work with them on a more functional level helps” |
Absorbing tension in environment | 7 (33.3) [3/42.9] | 0 (0) | Other people upset around him, he doesn’t like slight tension in the room, if voices are raised | “if people sort of shout…she seems to pick up the vibe of the atmosphere” | N/A |
Changes to routine/expectation | 16 (76.2) [5/31.3] | 9 (100) | Lots of staff changes, Christmas because so many changes, changes from the norm, summer holidays | “any change in routine seems to majorly unsettle him especially in his own environment” | “are there any changes going on at the moment, has anything been done differently in terms of change to teacher to cause anxiety, we’re immediately kind of thinking” |
Too much structure/knowing plans too far in advance | 1 (4.8) [0/0] | 1 (11.1) | Her anxiety rises too far in advance, he’s constantly asking questions | “if she knows too far in advance, her levels of anxiety appear to rise” | “as soon as you start preparing him for something he’s constantly asking questions…starts getting anxious” |
Busy environments | 9 (42.9) [3/33.3] | 2 (22.2) | Crowds, lots of people, shopping centres, busy lobby, cafés, pubs | “we can’t take him on a normal school holiday… it’s way too busy, he doesn’t like crowds” | “does not like crowds or busy places” |
Loud environments/particular noises | 14 (66.7) [5/35.7] | 5 (55.6) | Places that are loud, people that are loud, too noisy, any kind of noise, very sensitive to noise | “if people are loud or shouty around her” | “the noise, that was a real issue for him where hitting just went right up” |
Particular places, situations, stimuli or people | 12 (57.1) [4/33.3] | 7 (77.8) | Dentist, appointments, hospitals, balloons, pigeons | “he’s never liked going to appointments…I’ve always had his dentist going to him” | “birds is another one…balloons because they didn’t like the movement of the balloon” |
Overwhelmed by sensory experiences/too many activities | 14 (66.7) [5/35.7] | 6 (66.7) | Sensory overload, sounds, lights, tactile defensive, lots of sensory stimuli | “if that sensory mode gets too overloaded, that’s where the coping mechanism goes” | “sensory overload is a massive thing” |
Under stimulated/bored/sensory seeking | 4 (19) [2/50] | 3 (33.3) | Under stimulation, linked to sensory needs, opportunity to express and release that | “trying to not let him be bored or left unattended” | “under-stimulation can have a bearing upon, their levels of anxiety” |
Sensory difficulty (direction not stated) | 0 (0) [0/0] | 1 (11.1) | N/A | “environmental type stuff, it could be linked to like sensory needs” | |
Social interactions/meeting people | 4 (19) [2/50] | 0 (0) | She doesn’t interact well with people, risk of social interaction | “the risk of interaction, the fear of what might be expected” | N/A |
Transitions | 6 (28.6) [3/50] | 4 (44.4) | Transitioning between rooms, from home to school and home again, primary to secondary school | “transitioning into school or from school back home or just moving into the dining area” | “we get spikes of referrals at key transition times…in October when schools have been back a month” |
Enclosed spaces | 2 (9.5) [1/50] | 0 (0) | Doesn’t like small places, claustrophobic | “he doesn’t like being in enclosed spaces” | N/A |
Setting events | 14 (66.7) [6/42.9] | 7 (77.8) | Tired, pain, cold, hot, hunger, hormonal, menstruation, physical health difficulty, epilepsy, medication change/effects | “things like hunger or pain or tiredness may well influence that” | “could be pain or some physical health syndrome but actually it is giving them anxiety because they can’t understand what’s happening in their body” |
Unable to fix issue | 2 (9.5) [2/100] | 0 (0) | Unable to fix problem, DVD stuck, iPad frozen | “it’s just ‘fix this’…through desperation” | N/A |
Insistence on sameness | 5 (23.8) [2/40] | 1 (11.1) | Seat belt wasn’t on right, deviation from rigidity, people in certain positions | “he likes it a certain way…he’s just decided that’s his thing…it certainly causes anxiety” | “being very rigid about how you want things to be done and when that’s deviated from they display anxiety” |
Removal of interests | 3 (14.3) [2/66.7] | 2 (22.2) | Worry that someone will take it, run out of bubbles, not being able to access special interest | “I am anxious because I know my bubbles have nearly run out and I need to get some more” | “not being able to access their special interest or they have a particular restricted interest which means they aren’t able to access that particular interest as much” |
Worry after hurting others | 1 (4.8) [1/100] | 0 (0) | Trying to rub away blood from scratch | “if it bleeds, you can see the anxiety, he tries to rub it out, ‘go away, sore gone” | N/A |
Conscious of own limitations | 1 (4.8) [1/100] | 0 (0) | Feels different to others, aware of difficulties | “he is more aware of his difficulties as in like his language and interaction skills” | N/A |
Missing out/not being part of activity | 1 (4.8) [1/100] | 0 (0) | “he was feeling isolated that we were able to communicate in a way that he can’t” | N/A | |
The way others treat person | 4 (19) [0/0] | 0 (0) | They weren’t very nice to him, some of the staff were getting bossy like ‘do this, do that’ | “they might tell him off or they might shout at him…he doesn’t feel safe if people do that” | N/A |
Weather | 2 (9.5) [1/50] | 0 (0) | Grey cloudy heavy day | “if it’s kind of a grey cloudy heavy day, I think she’s more tense” | N/A |
Going out anywhere | 3 (14.3) [2/66.7] | 1 (11.1) | Being out of the house, not used to being in community, even just leaving the house | “we want to try and get him out in the community but that does cause him a lot of anxiety” | “even just leaving the house for example, all that uncertainty” |
People coming into house to look after her/him | 2 (9.5) [0/0] | 0 (0) | He wouldn’t accept people coming in, invading his territory | “if there are new people coming in then that makes her anxious” | N/A |
Big people/big men | 1 (4.8) [0/0] | 0 (0) | Victim of attack | “he was the victim of a sustained vicious attack so he has got…fear around big men” | N/A |
Separation anxiety | 2 (9.5) [1/50] | 0 (0) | If parents go out of sight when with them, following, clinging | “going away from me, he feels separation anxiety” | N/A |
People talking about individual when they’re present | 1 (4.8) [0/0] | 0 (0) | Having a conversation with the staff and he’s sat there, talking about the past | “you’re talking about the past…they are talking around him and he’s listening” | N/A |
People suddenly coming into home | 1 (4.8) [0/0] | 0 (0) | Classing that as his safe place, it’s his home and he’s got somebody from next door coming into it | “he wouldn’t accept people coming in here… I think its invading his territory” | N/A |
Significant life changes | 2 (9.5) [0/0] | 2 (22.2) | Bereavement, family member/friend moving away | “she went off to university two years ago so obviously that has had an impact on him as well” | “significant loss for some of our youngsters” |
Waiting | 2 (9.5) [2/100] | 2 (22.2) | He won’t wait for things, wait 3 h before a procedure | “he finds waiting really hard… if we have to queue or pause in traffic” | “he won’t wait for things either” |
Anxious network | 0 (0) | 2 (22.2) | Parental anxiety, anxiety in the network around an individual | N/A | “increase in anxiety in the network which then might translate to the poor person if they’ve got an anxious network around them” |
Attachment difficulties | 0 (0) | 3 (33.3) | Didn’t form an attachment with anyone, breakage of primary attachment relationships, individuals going into care, looked after children | N/A | ”what we see clinically is the breakage of the primary attachment relationships with people in staff or sometimes parents or carers…that causes increased anxiety” |
Clinician Assessment of Anxiety and Challenges of Assessment
Themes | Subthemes | Subthemes |
---|---|---|
Methods of assessment for anxiety | Current anxiety assessment | |
The importance of informant involvement and gathering information across contexts | ||
Identification of behavioural change | Identification of an individual’s baseline behaviour | |
Importance of knowing an individual well, regular assessment and individualised approach | ||
Differentiating anxiety from other forms of distress | Behavioural overlap and behavioural divergence | Importance of context and identification of anxiety trigger |
The importance of ruling out other causes of distress | ||
Importance of working as part of a multidisciplinary team | ||
Additional diagnoses | Consideration of diagnoses and impact on presentation | |
Diagnostic overshadowing |
Results
Presentation of anxiety: Content analysis
Clinician experience of anxiety assessment: IPA analysis
Theme 1: Methods of assessment for anxiety
Theme 2: Identification of behavioural change
Theme 3: Differentiating anxiety from other forms of distress
Theme 4: Additional diagnoses
Discussion
Considerations for the development of new assessment measures | |
---|---|
Explore similar behaviours and triggers to existing measures but develop and validate new measures specifically for individuals who speak few or no words | |
Existing measures should be used to pinpoint key behavioural markers of anxiety, otherwise they should be used cautiously | |
Spend time getting to know an individual and collate information from several informants across contexts alongside use of questionnaire measures | |
Explore the potential role of physical discomfort/pain, form and maintain relationships with colleagues in physical health settings (e.g., MDT formulation)a to achieve this | |
Incorporate the assessment of baseline presentation to identify behavioural change and help tackle diagnostic overshadowing | |
Consider comorbid diagnoses and the impact they may have on an individual’s presentation |