A total of four themes and 22 sub-themes were identified in the analysis. The identified themes were: The treatment situation; treatment goals at CAP, treatment interventions; and desired development. For an overview of the themes containing each practitioners’ answers, see Table 2 below.
Table 2. Themes, sub-themes and response rate
A description of each respondents answers according to each sub-theme and the total rate of answers per sub-theme (%).
|
|
Interview
|
|
|
|
1
|
2
|
3
|
4
|
5
|
6
|
7
|
8
|
9
|
10
|
11
|
12
|
Total
|
%
|
Treatment situation
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
SAPs and ASD
|
x
|
x
|
|
x
|
x
|
x
|
x
|
x
|
|
x
|
x
|
|
9
|
75
|
|
Prolonged SAPs
|
|
|
|
x
|
x
|
x
|
x
|
|
x
|
|
x
|
|
6
|
50
|
|
Challenging situation
|
x
|
x
|
x
|
x
|
x
|
|
x
|
x
|
x
|
x
|
x
|
|
10
|
83
|
|
Parental factors
|
x
|
|
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
10
|
83
|
|
Adjustments in school
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
12
|
100
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Treatment goals at CAP
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
”Our assignment”
|
x
|
|
x
|
x
|
x
|
x
|
x
|
x
|
|
x
|
x
|
x
|
10
|
83
|
|
Boundaries concerning treatment goals
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
|
x
|
x
|
x
|
x
|
11
|
92
|
|
Poor autcome
|
x
|
x
|
|
|
x
|
|
x
|
x
|
|
x
|
x
|
x
|
8
|
67
|
|
Frustration
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
|
|
x
|
x
|
10
|
83
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Treatment interventions
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Motivational work
|
x
|
|
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
10
|
83
|
|
Assessment of SAPs
|
x
|
x
|
x
|
x
|
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
11
|
92
|
|
Behavioral activation
|
|
|
|
x
|
x
|
x
|
x
|
|
x
|
x
|
|
|
6
|
50
|
|
Psychoeducation
|
|
x
|
x
|
|
x
|
x
|
|
x
|
|
|
x
|
|
6
|
50
|
|
Exposure
|
|
x
|
|
x
|
x
|
|
|
|
x
|
x
|
|
|
5
|
42
|
|
Parental support
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
12
|
100
|
|
Collaboration
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
12
|
100
|
|
Change of school
|
|
x
|
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
|
9
|
75
|
|
ASD assessment
|
x
|
x
|
x
|
x
|
x
|
x
|
x
|
|
x
|
|
x
|
x
|
10
|
83
|
Desired development
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Early detection
|
|
x
|
x
|
|
x
|
x
|
|
|
|
|
x
|
|
5
|
42
|
|
School mapping
|
|
x
|
|
|
x
|
|
x
|
|
|
|
|
x
|
4
|
33
|
|
The school’ competence
|
|
x
|
x
|
x
|
|
x
|
|
|
|
|
x
|
x
|
6
|
50
|
|
Increased collaboration
|
x
|
x
|
|
|
|
x
|
|
x
|
|
|
x
|
x
|
6
|
50
|
Notes. ASD: autism spectrum disorder; SAPs: school attendance problems, assessment SAPs; assessments of psychiatric illness and SAPS; ASD assessment: autism assessment; CAP: Child and adolescent psychiatry.
Please insert Table 2 here
The treatment situation
The clinical practitioners gave a fairly distinct picture of the treatment situation. According to the clinicians’ view, the patients’ school attendance problems were related to ASD core symptoms, school, parents or primary caregivers’ mental health problems, and a lack of collaboration between them.
SAPs and ASD
A majority of the clinicians reported that a patient at CAP who presented extensive SAPs and psychiatric symptoms, such as anxiety or depression, had difficulties related to ASD symptoms or undiagnosed ASD.
“The majority of my patients with SAPs have a diagnosis of ASD. It happens that I start working with a patient with for example depression or generalized anxiety disorder (GAD), but after a while when you’ve gotten to know the child and performed an assessment, then you see a lot of signs related to ASD that says yeah, we should probably do an ASD assessment.” (R4)
Prolonged SAPs
About half of the clinical practitioners described that their patients had been absent from school for some time, ranging between 6 and 24 months, in extreme cases up to three years.
“Some have been at home for one, two years. Completely at home.” (R6)
“I’ve had one patient who hasn’t had any schooling for three years.” (R4)
Challenging treatment situation
Children and adolescents with ASD who have SAPs in combination with a long period of home isolation and in combination with depression and anxiety deal with a lower level of function and greater complexity in providing treatment. Almost all the clinicians described how with these circumstances, treatment was more complex and challenging. If the difficulties establishing contact were severe, this could lead to termination of treatment before a proper assessment was made. Treatment compliance differed significantly. A common scenario was meeting a teenager who has no intention of making behavioral changes. These patients often had greater difficulties imagining an alternative life. Some other risks mentioned by the clinicians were that some adolescents developed an addiction to video or computer games, which led to increased social isolation (minimized contact with others). One clinician expressed as following:
“A child explained that he or she had anxiety at school and now when he or she was at home, the patient doesn’t have any anxiety, so why should he or she attend school?” (R5)
Parental factors
Parents' mental health problems were a challenge in the treatment according to the clinicians. They described that most parents of children and adolescents with ASD and SAPs often suffered from mental health problems along with psychosocial problems. Some of them had these issues beforehand, but a majority seemed to be impaired as a consequence of the long struggle to get community support for their children with ASD.
“The parents are often pretty exhausted after many years of uncertainty and struggle.” (R6)
The clinical practitioners depicted that for a majority of parents involved in treatment it was difficult to implement and maintain parenting strategies.
”...if the parents cannot maintain the learned strategies, then it becomes really difficult.” (R4)
Adjustments in school
All the clinical practitioners reported that there is a lack of knowledge about ASD at school and the adjustments needed in order to meet the needs of children with ASD and SAPs. According to them, adjustments made in order to accommodate the patients with ASD could entail: an increased degree of structure; clearer communication; preparation; predictability; and limitation of stimuli. The practitioners did not see that school staff have made enough efforts, such as adapting pedagogical methods to help the patient to return to the school. The schools could benefit from using for example homeschooling approaches at a slower pace, a personalized curriculum and/or connecting the children with a suitable contact person. Some clinical practitioners stated that when the school did not have an adapted approach or the framework for welcoming a child with severe SAPs and ASD back to school, the patient had nothing to gain from trying to return to the school in question. Even giving the present school a try could be considered harmful.
“Those with really big difficulties at school, I actually almost consider it as an assault. To force them into a context that they can’t handle (…) only results in increased anxiety and depression and self-harm.” (R4)
Treatment goals at CAP
Many of the clinical practitioners had opinions about how treatment goals concerning patients who did not attend school should be formulated at CAP, and how the practitioners perceived the carried-out treatments. Their answers were centered around the following sub-themes: “our assignment”; “boundaries concerning treatment goals”; ”poor outcome” and “frustration”. Below we focus on the primary results.
A majority of the clinicians described in various ways how they tried to be clear, both with themselves and others, that to ensure attendance at the school was not CAP’s assignment. The practitioners delineate efforts to maintain focus on what they considered to be their mission, that the child returned to a mentally stable state and a higher level of functioning. Many practitioners seemed inclined to differentiate the school’s goals from CAPs.
“I usually say that you need a daily activity and schooling is the most natural environment four our group, bhut they might as well start working at he local grocery store.” (R8)
“It’s really good if it means that they start to attend school but (…) that’s not our original goal. That’s the schools’ goal, that the child should be in school.” (R3)
Boundaries concerning treatment goals
The boundaries of assignments between the schools and CAP for children and adolescents with ASD and SAPs were described as complicated. Practitioners saw school as a natural and important environment for their patients to grow and improve their mental health. A good school environment and an increased school level were closely intertwined with the perceived higher level of function. Almost all clinical practitioners described how they, or other practitioners in their unit, approached a task in different ways in order to get their patients back to school. Some were positive about an assignment that included the schools’ approach, while others were more critical towards it.
”Is this what one is educated to do, to be the person that maybe helps patients back (…) to school? Is that really what our resources at CAP should be used for?” (R6)
“… schooling isn’t really a part of our mission (…) but we are present at a lot of school meetings.” (R3)
Poor outcome
When asked how they experienced the results of treatments carried out, i.e., if the patients had reached the formulated treatment goals, most of the practitioners said that they did not reach the treatment goal if these were related to helping patients return to the school. Many practitioners described frustration when the main assignments were related to returning to school. They often found the unclear boundaries between CAP, school, and social services difficult. Many factors that affected the patients' well-being as well as the treatment outcome were described as beyond their control.
“Regarding a bigger presence in school? That hasn’t been successful particularly often I would say.” (R10)
Frustration
Many practitioners described frustration when the main treatment goals were related to returning to school. They often found the unclear boundaries between CAP, school, and social services difficult to handle. Many factors that affected the patients' well-being as well as the treatment outcome were described as beyond their control.
“This has been the source of massive frustration during many years.” (R2)
…All these cases we get concerning kids with a high absence from school is problematic because a big part of it concerns factors that’s hard for us to control. But the case is put forward to us as something for us to solve.” (R2)
Treatment interventions
The interventions viewed as central to progress in the treatment were motivational work, assessment of mental health and SAPs, ASD assessment, parental support, psychoeducation, cooperation with other societal organizations, behavioral activation, change of school, and exposure. The latter two were considered to be of the most interest and are highlighted below.
Motivational work
Many of the clinicians described motivational work as an important intervention that had to come before initiating a process of change. During this phase, the patients had a chance to enhance their awareness about how their actions were connected to their ill-being. To make room for this phase, alongside building an alliance, was seen as crucial with children with ASD without any obvious suffering about their isolation at home.
”…it’s pretty important to catch the small parts when (…) it’s not so fun. And try to get them to see the connection between what we do and how it effects how we feel.” (R10)
Assessment of SAPs
During the process to create a conceptualization with the patient almost all therapists depicted the importance of carefully assessing the patients’ school absence. To skip the phase of assessment and go straight to initiating a process of change (e.g., pushing the child back to school) was seen as hazardous. Often there was a considerable amount of stress in the system that could push the practitioners to work faster than they wished to.
“I believe that we initiate treatment to quick before we’ve had a proper chance to assess and understand what are the underlying difficulties that we’re dealing with.” (R8)
“Yes, a very careful mapping of the school absence. In my experience, if one doesn’t do this it’s all a waste.” (R2)
Behavioral activation
About half of the practitioners depicted the importance of supporting the child and parents to break the isolation and broaden the child's behavioral repertoire. This was seen as reasonable treatment goals in response to the common psychiatric disorders of depression and anxiety which created avoidance of many situations. This was often described as a challenging task where the therapist had to rely on the conceptualization and explore the child’s interests.
“To help the child get out or to do other behaviors that could be useful later on when there’s a school in place.” (R10)
“...I actually thing that is the most important (…) this social activation.” (R4).
“I believe in disturbing the isolation.” (R9)
Psychoeducation
Many clinical practitioners mentioned providing proper psychoeducation to parents and patients as an important treatment intervention. They noticed more than occasionally a great lack of understanding of ASD, which created unreasonable demands on the child. This intervention resulted in more appropriate levels of demands on, and diminished stressors for the child.
“…I think this is needed, that the parents get an increased understanding about autism and frankly how their children works and what they should and shouldn’t do.” (R5)
”There’s a lot of focus(…) to increase knowledge and the understanding about the diagnoses. It’s not the same for all children with SAPs but concerning the ASD diagnosis it’s often pretty similar I would say.” (R1)
Exposure
Some practitioners were hesitant to use exposure and response prevention (ERP) as an intervention of CBT. Other clinicians (trained in CBT) considered ERP useful for patients with ASD if a careful assessment of and adjustments to the functional differences was made.
“...in my opinion, it’s harder to generalize, but it’s not impossible. So, one probably has to work at a slower pace than with an ordinary patient with anxiety. But I don’t consider autism to be another type of human where it’s hopeless and that they’ll never get anything when it comes to feelings. They are just on a continuum where they have an extra hard time with this, but everyone has emotions…So it’s not a matter of a different species.” (R9).
Parental support
All practitioners described working closely with the parents. Giving parental support had several layers. The patients had a low level of functioning and could be unmotivated to participate in treatment, which led to contact efforts via the adults. Parental support also led to the parents being able to give a heightened support to their child. It was described as common for the adults to feel an enormous stress about the high absence from school. This stress created relational tension. When the adults tried to make demands, it was often perceived as nagging and led to a higher level of conflict. Common interventions were to validate the parents’ stress, help them problem solve, chose their battles, and make room for conflict free moments.
“Maybe we can help the parents to choose their battles and lessen the nagging that we know increase the level of stress.” (R3)
Collaboration
All practitioners described that a large part of their work was to ensure an adequate collaboration between the professionals and the parents surrounding the child. Without collaboration the patient got nowhere, in their opinion. This area was stressed by the therapist more than anything else as crucial to create a process of change. The collaboration was foremost between the parents, school, and CAP but not exclusively. In the Swedish context, collaboration with social services was common.
“I can’t think of any patient sitting at home where we could work and make progress only by ourselves. Almost in every case there has been a collaboration with the school.” (R5)
Change of school
The clinical practitioners described how they could recommend a switch of schools in the event of prolonged SAPs. A change of school environment could be recommended in the following cases: substantial lack of adaptation for children and adolescents with ASD; long-term school attendance problems; the patient requires enhanced school adaptations. Most clinicians reported that according to their experience, a school change could be a powerful intervention. They stated that their patients were not able to reintegrate into their old schools, for example the child being conditioned to a negative emotion (such as anxiety) and/or to previous failures connected to the location. The clinicians found this response difficult to break.
“It’s pretty rare to see it turn into a functioning school environment…in the same school.” (R4)
“When one finds another type of school with a higher degree of adjustments, that’s what I experience as most successful.” (R10)
Often, they recommended a change to a school with more adjustments in place than an ordinary school. The practitioners spoke about many schools lack of the right knowledge to reintegrate the child again and therefore wished for a school where the staff had a greater understanding about how to adapt the school environment to a child with ASD.
ASD assessment
In the case of an unsuccessful treatment trial (e.g., with focus on depression or anxiety) many of the clinicians emphasized the importance of making a clinical assessment to determine if the patient met the criteria for an ASD diagnosis.
“…if there has been a long-lasting school absence for one semester and if the next semester doesn't seem to amount to any change maybe you need to question…It’s so easy to say that everything is depression and anxiety but often I think that, from my experience, that it depends on something.” (R4)
Desired development
The clinicians had many thoughts about desired development in this field and were eager to share how they wished to improve treatment for this group of children and adolescents. Their focus was mainly on preventing severe SAPs from evolving and the impression they had about the school’s competence.
Early detection
Around half of clinicians considered early detection of SAPs in children and adolescents with ASD as necessary. There is a need for better competency among professionals in detecting SAPs at schools. The duration of school absenteeism was observed to correlate with the treatability of patients. The clinical practitioners, therefore, viewed the duration of SAPs as a predictor of the potential to make behavioral changes.
“It’s not ok that so much time has passed (...). I mean, we can initiate treatments when the child has been at home for 6 months and (...) I can’t describe how cemented it is after that amount of time. And how far the way back is. It’s a disaster.” (R2)
School mapping
Some of the clinical practitioners expressed the need for greater routine in schools with a focus on assessment of SAPs in children and adolescents with ASD. This mapping should have a focus to assess the different factors affecting the child negatively in school, such as not knowing what to do on breaks and having to change classrooms frequently.
“I’m of the opinion that it shouldn’t be unreasonable for the school to have a responsibility of their own for making a quick mapping. That responsibility has now landed within the psychiatric care.” (R2)
The schools’ competence
About half of the clinical practitioners expressed the need for greater competence and routine in schools with a focus on early detection and assessment of SAPs in children and adolescents with ASD. About 50% of the practitioners indicated that the schools they had been in contact with had a lack of knowledge about challenges that patients with ASD face at school. The clinicians expressed a need for increased competence regarding SAPs and ASD.
“I’m of the opinion that it shouldn’t be unreasonable for the school to have a responsibility of their own for making a quick mapping. That responsibility has now landed with psychiatric care.” (R2)
Increased collaboration
All therapists stated that a large part of their work was to ensure good collaboration with professionals surrounding the child. In their opinion, the cooperation between organizations around this population is crucial. About half of the clinical practitioners were not satisfied with the degree of collaboration they experienced. They wanted to see an expanded collaboration earlier in the process to have a firmer grip of the situation before the problems came to a degree that they required psychiatric care such as CAP.
“...if we could create better cooperation, quicker, with the school, the district, social services and CAP then I think we could catch this problem so much earlier. So that it doesn’t have to become such a serious psychiatric illness that’s often the case with the children we see here.” (R6)