Abstract
Literature about Autism Spectrum Disorder (ASD) primarily focuses on children; however, growing evidence suggests that the impairments in functioning persist into adulthood. 1 With a relatively recent increase in awareness, the age of diagnosing adults with ASD (AwASD) has been as late as above 50 years. 2
A systematic review evaluating the presence of ASD in adult psychiatric inpatients found a prevalence of 2.4%–9.9% 3 ; more extensive studies in the general population are lacking. The numbers in India are estimated to be over 64 per 10,000 among the general population. 4 A recent systematic review revealed the pooled percentage prevalence in urban and rural Indian populations to be 0.09 and 0.11, respectively. 5 The proportion of AwASD is likely to be further under-represented. 4
AwASD remains more dependent on their family members than their healthy counterparts. 6 Schooling, social participation, and competitive employment remain far-fetched goals for many,6–8 especially in Low and Middle-Income countries (LAMICs). Hence, vocational rehabilitation (V.R.) services are essential for AwASD. A recent review revealed scanty and variable evidence, along with the dearth of an ecosystem perspective, on V.R. services for AwASD. 9
Potential barriers in the V.R. for AwASD need to be explored to inform the development of such services. We present a case series of four AwASD who have followed up at a tertiary neuropsychiatric hospital’s psychiatric rehabilitation services (PRS), focusing on the barriers in V.R.
The PRS at our institute focuses on promoting the recovery of individuals with mental illness, including their V.R. A multidisciplinary team comprising psychiatrists, clinical psychologists, psychiatric social workers, nursing staff, and vocational instructors works with clients to provide prevocational and vocational training and supported employment.
A review of case records of four AwASD attending the PRS focused on identifying barriers faced in their V.R. process. Written informed consent was obtained from the patients as well as their caregivers. Records were studied for relevant case details pertaining to the diagnosis, treatment regimen, therapeutic challenges, attempts at V.R., and the barriers to the same. A summary of the four cases has been presented below.
Case Series
Case 1
Ms A is a 22-year-old single woman of middle socioeconomic status (MSES) from Bengaluru (a metropolitan city) formally educated up to the 12th standard. She is also trained in printing, computer operations, and tailoring. However, she has never obtained competitive employment. She presented with complaints of staying aloof and self-talking since childhood, inappropriate smiling to self and suspiciousness about neighbors for six years, insistence on living independently for 4–5 months, and agitated behavior for 15 days. After evaluation and observation, she was diagnosed with pervasive developmental disorder, unspecified; unspecified nonorganic psychosis; type II diabetes mellitus; borderline intellectual disability; systemic hypertension; polycystic ovarian disease, and bronchial asthma. She had two seizure episodes in 2021 (hot water epilepsy), with no recurrence. Her treatment regime included Haloperidol 15 mg/day, Trihexyphenidyl 4 mg/day, Oxcarbazepine 900 mg/day, and Metformin 1 gm B.D. There was a history of partial response to Risperidone and Aripiprazole in effective dose ranges, and significant weight gain was noted while on Risperidone. Her physical examination and routine investigations were unremarkable. The latest mental state examination (MSE) revealed a restricted range of expressions, an irritable affect, and poor insight into her condition. She spent time at a nongovernmental organization (NGO), where she was engaged in proofreading and editing.
The critical barriers in training and placement included symptoms of ASD (social skill deficits and behavioural disturbances), borderline intellectual disability, parental discord, and poor knowledge, attitude, and practices of the father regarding her condition. Often, at the workplace, she would have anger outbursts precipitated by ruminations of past adverse incidences. In the long run, she discontinued work due to a lack of interest and limited other options being available. Her mother was overprotective of Ms A and suffered from burnout. The mother’s overprotectiveness mainly stemmed from Ms A’s repeated self-harm threats, which prevented the mother from allowing her to go out alone and stay by herself.
Case 2
Mr A, a 29-year-old single male, of higher socioeconomic status, from Bengaluru, is educated up to the sixth form in the United Kingdom (U.K.), supplemented with vocational skills, office skills, and independent living skills. He was working in a clerical job in a private company. He presented to us with poor social and communication skills, difficulty identifying and expressing emotions, and repetitive hand movements since three years of age and repetitive, intrusive, and distressing doubts for the past 9-10 years. There was a history of paranoid schizophrenia in his paternal grandmother. He was diagnosed with Asperger’s syndrome and Obsessive Compulsive Disorder (OCD)-mixed. He was on Escitalopram 30 mg/day. His latest MSE revealed difficulty in identifying and expressing the frequency and duration of his emotional difficulties, occasional wringing repetitive hand movements, and obsessive doubts.
He worked at two companies (Infomedia- and book-publishing-related), where he had an inclusive workspace, staff sensitized to his issues, and an individualized training program. The barriers in the V.R. of Mr A were somewhat different. His grandmother had a psychiatric illness, and he had never received serious attention and care from his parents. Secondly, the family regularly attended autism peer groups in the U.K., and the lack of such support in India was challenging. Thirdly, the restrictions in place because of the COVID-19 pandemic had made various V.R. facilities inaccessible. Finally, Mr A would often have angry outbursts triggered by obsessive ruminations, creating workplace issues.
Case 3
Ms R is a 22-year-old single female from Bengaluru, belonging to MSES. She had done her schooling till the seventh standard. However, unlike the previous cases, she had received no additional training, which might be one of the reasons she was never gainfully employed. She presented with aggressive impulses, ruminations, obsessive images, reassurance-seeking behavior, anger outbursts, physical and verbal aggression, and talking and smiling to self for eight years, in the background of poor social interactions and restricted, repetitive interests since childhood.
She was diagnosed with childhood autism, unspecified nonorganic psychosis, OCD-mixed, obesity, hypothyroidism, and systemic hypertension. On Intelligence Quotient testing, the score was suggestive of dull normal intelligence. On MSE, obsessive imageries, proxy compulsions, irritable affect, and poor insight into her condition were noted. On the Yale-Brown Obsessive Compulsive rating scale, she had a severity score of 30. The current medication regimen included Clomipramine 150 mg/day, Sertraline 200 mg/day, Lamotrigine 200 mg/day, Lithium 750 mg/day, Amisulpride 600 mg/day, Aripiprazole 30 mg/day, Thyroxine 150 mcg/day, and Memantine 20 mg/day (for augmentation for OCD). In the past, response to Fluoxetine, Fluvoxamine, and Escitalopram have been inadequate.
Attempts for training and placement of Ms R were greatly hindered by her behavioural disturbances, which often required emergency care. Additionally, the treatment refractoriness of her OCD posed challenges in V.R. This might be due to a lack of her amenability for cognitive behavioral therapy because of dull normal intelligence and ASD. The family was looking for supported living accommodations—specifically, halfway homes and long-stay homes funded by the government, which were difficult to find.
Case 4
Mr S, a 30-year-old single male from MSES, from Bengaluru, is educated up to 10th standard, with additional training in data entry, proofreading, indexing, attendance record, and Photoshop. By virtue of these skills, he has secured a job in a private company and is engaged in proofreading and editing. He presented to us with physical and verbal aggression, talking and smiling to himself, and poor self-care for 10 years, along with obsessional ruminations and compulsive uttering of repetitive phrases for 6–7 years in the background of poor eye-to-eye contact, restricted range of interests, impaired emotional responsiveness, and poor social interaction since childhood. He was diagnosed with childhood autism, unspecified nonorganic psychosis, and OCD—mixed. The latest MSE findings included poor eye-to-eye contact, delayed response time, and occasional irritability. He was on Risperidone 8 mg/day and Fluoxetine 60 mg/day. Mr S’s social skills deficits and behavioural disturbances hindered his V.R. He was often unable to understand the social cues and expressions of others, leading to conflicts in the workplace.
Additionally, Mr S and his caregivers were initially reluctant to train. His daily routine was unstructured, making it difficult to involve him in activities. The poor quality of services (in terms of supervision, variety, and competency) provided at one of the day care centers outside our institute was another concern. The critical attitude of his parents was also detrimental to his V.R.
The barriers encountered in these cases have been grouped into six categories, as shown in Box 1.
Summary of the Barriers Encountered in the Vocational Rehabilitation of Four Adults with Autism Spectrum Disorder.
Behavioural disturbances Social skills deficits
Refractoriness of illness Borderline intelligence
Reluctance for vocational training Unstructured daily routine Behavioural disturbances (anger spells, inappropriate behavior) Social skill deficits (e.g., misinterpretation of social cues)
Poor knowledge, attitude, and practices Negative expressed emotions Discord between primary caregivers Burnout in the primary caregiver Reluctance towards vocational training Lack of adequate parental care due to mental illness in another family member Overprotective primary caregiver
Poor quality of facilities Lack of special facilities for people with autism Lack of Government-funded halfway and long-stay homes Lack of autism peer groups
Pandemic-related restrictions
Discussion
V.R. in ASD is an emerging area of research. A study comparing rehabilitation services for various illnesses showed that AwASD received the most expensive set of services. 10 To our knowledge, no study has been conducted in India to evaluate the barriers in V.R. of AwASD. We grouped the elicited barriers into those related to ASD itself, comorbid mental illness, individual factors, caregiver, service provision, and miscellaneous (Box 1).
Literature has revealed difficulty in interaction, cognitive dysfunction, behavioural issues, comorbid psychiatric illness, and anxiety at the workplace as significant challenges for rehabilitation in AwASD. 11 Apart from anxiety at the workplace, the rest have been highlighted in our case series.
Other relevant challenges reported include complex clinical care and service coordination across systems, availability of and access to specialized V.R. services for AwASD, and poor community awareness. 12
Our case series has highlighted that barriers exist at all levels, starting from poor knowledge about illness and expressed emotions in caregivers, followed by a lack of multidisciplinary and specialized services, illness-specific factors, and poor community acceptance. Since most of these adults had comorbidities to be dealt with, services that coordinate clinical care with V.R. are highly imperative. While the index institute could provide the same under one roof (apart from exclusive V.R. services for AwASD), similar services elsewhere are lacking in the country. Factors specific to the illness highlight the need for tailored interventions and trained professionals to deal with AwASD, which are already scarce in LAMICs such as India. Other measures of support, such as halfway homes and long-stay rehabilitation homes, primarily funded by the government, are missing in the country. Autism peer and support groups, though upcoming in the past few years, are not widespread throughout the country. An equally important factor is the response by prospective employers and interviewers to AwASD. Working with employers, job coaches, occupational therapists, and peer support would also be crucial for employment. Further, supported employment and reasonable accommodation need to be provided, especially for AwASD in LAMICs.
Indian schemes like National Trust Act cater to the needs of children with ASD 13 ; however, AwASDs hardly have specific provisions in the Act. NGOs such as ENABLE India, Assisted Living for Autistic Adults (ALFAA), Biswa Gouri Charitable Trust (Pragati), Action for Autism, Swabodhini Charitable Trust, Center for Autism and other Disabilities Rehabilitation Research and Education (CADRRE), Arvind Foundation, and Vasantham assist in the V.R. of AwASD. 14 Another NGO, Youth4jobs, in collaboration with “Skill India” and National Skill Development Corporation, has worked towards an inclusive workplace. However, NGOs are limited in number and restricted to urban areas. Hence, policy changes are needed to address this critical issue.
In LAMICs, encouraging efficient usage of technology and telepsychiatry can be used to scale up the services. 15 A recent qualitative study cited financial difficulties and nonimprovement as the reasons for discontinuing rehabilitation services for adolescents with autism. 16 The same barriers can exist for the AwASD. The lack of affordable long-term residential services is an established problem India and other LAMICs face. 17 Further, coverage of mental illness and developmental disorders by insurance policies was largely scarce until recently, when things have started improving. 18 Hence, wider coverage through insurance policies and the availability of affordable services are highly imperative.
Being a case series, the current study lacks the evidence that a larger, well- designed study might ensure. However, these preliminary findings hold much promise for further research in this understudied area. More studies in this area from LAMICs can help develop appropriate V.R. interventions and services.
Conclusion
This case series highlights the challenges faced by the patients, caregivers, and healthcare providers dealing with V.R. of AwASD. Community-level mental health literacy, acceptance and service-provision-related deficiencies seem to be the significant barriers to V.R. of AwASD.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.