Roozbeh adult autism spectrum disorder clinic: lessons learned from first 34 cases

Abstract

Autism Spectrum Disorder (ASD) is a complex heterogeneous clinical entity with many overlaps and comorbidities with other psychiatric and developmental disorders. Adults with ASD lack adequate access to facilities and supports. This article describes the clinical profile of the first 34 patients admitted to Roozbeh adult ASD clinic during a 12-month period. Twenty-eight patients were male, all were single, 22 patients were unemployed and 26 were living with their families of origin. Obsession, inattention and sexual problems were the most common chief complaints. Multifaceted and gender-specific presentations results in misdiagnoses. Knowledge and training of the mental health professionals on adult ASD seem to be seriously inadequate. There is virtually no other specialized clinical and rehabilitation facilitates to help this vulnerable group of patients in Iran

Introduction

Autistim Spectrum Disorder (ASD) is a lifelong developmental disorder characterized by deficits in social communication and restricted interests. The prevalence of ASD diagnosis has been increasing over the past few decades (Fombonne 2018). Prevalence rate of ASD in the USA and Europe ranges from 1:59 to 1:100 according to epidemiological studies (Baio et al. 2018, Baird et al. 2006). Prevalence rate is estimated to be approximate to 1:100 in adult population (Brugha et al. 2011) although there are very few studies for adults.

The number of studies about adult population with ASD is not noticeable. However, there is a trend now to study adult population more than before (Arnold et al. 2019) .Although ASD is often expected to be diagnosed in childhood, it remains undetected until the adulthood in many cases. Complicated, atypical and more subtle presentations in adults (Griffiths et al. 2019, Velikonja et al. 2019), inadequate knowledge among mental health professionals, presence of other psychiatric comorbidities and overshadowing with other conditions hinder accurate diagnosis and timely access to proper treatments including rehabilitation(Kan et al. 2008).

Adults with ASD lack adequate access to facilities and supports (Gerhardt and Lainer 2011, Shattuck et al. 2012, Turcotte et al. 2016) compared to children which is known as “service cliff” (Havlicek et al. 2016, Roux 2015, Shea et al. 2018). In most places, particularly in developing countries, there are simply no specialized services for people with ASD. Further, the required services specialized for adult are not clearly investigated either (Turcotte et al. 2016) and evidence-based programs for transition to adulthood are not well established (Kuo et al. 2018). Regarding many challenges that adults with ASD may experience in their daily life adult ASD specific programs should target multiple domains such as employment, education, independent living and social relationship (Shattuck et al. 2012).

No reliable data is available about prevalence of ASD among adult population in Iran (both clinical and general population) and no services are developed for adult population in Iran. Recently established Roozbeh Adult ASD Clinic is the first and only specialized academic clinic nationwide that aims to address various needs of adults with ASD. This article describes the clinical profile of first 34 patients admitted to Roozbeh adult ASD clinic and attempts to draw lessons learned from this endeavor.

Methods

Setting

Adult ASD team members in Roozbeh hospital consists of a general adult psychiatrist, a child and adolescent psychiatrist, three psychologists and a social worker. The ASD clinic is one of the Adult Neurodevelopmental Disorders Clinics in a nationally well-known psychiatric hospital. Patients may be referred to the clinic by various health professionals or through a self-referral system.

Roozbeh hospital is arguably the best-known psychiatric training center at the national level in Iran. As such, any clinical or academic program developed in this hospital tends to be replicated in other psychiatric centers. The clinic therefore aims to assist and empower psychiatry residents to develop adequate skills and competencies in assessing and managing adults with ASD. Psychiatry residents have the opportunity to participate in ASD clinic during their child and adolescents psychiatric training rotation. They participate in history taking and are given feedbacks about their clinical and communication skills. They are also involved in decision making and individual management of the patients.

The clinic, established in April 2019, operates one day per week, with usually one new assessment and three follow-up appointments scheduled per each active day of clinic.

Clinical evaluations

At the first visit, the psychiatrist and one of the psychologists evaluate the patient through a comprehensive interview. Diagnoses were made by a board-certified psychiatrist base on clinical interview and clinician’s judgement. A full developmental history is taken with the focus on interests, social interactions and relationships across the life span and education and working status. Other informants (parents, partners or friends) are interviewed subsequently.

Following assessments are conducted for all patients:

• The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) - a 80-item scale to assist the diagnosis of adults with Autism Spectrum Disorders with the cutoff point of 65 (Ritvo et al. 2011).

• Autism Quotient – a 50-item questionnaire to assess autistic traits in adults (Baron-Cohen et al. 2001).

• Stanford-Binet Intelligence Scale (Roid and Pomplun 2012).

Interventions

Services will be provided through collaborative and evidence-based care. Once the principal and comorbid diagnoses are confirmed, appropriate pharmacotherapy is started by psychiatrists. Patients may be assigned to psychologists for individual or group communication and social skill training and coaching. Patients may be enrolled in Program for the Education and Enrichment of Relationship Skills (PEERS®) which is an evidence-based manualized, social skills training intervention for adolescents and young adults (Laugeson et al. 2012). If needed, patients may be referred to the team’s social worker for practical support such as supported employment.

Consultations with other services such as Addiction, Neuropsychiatry, Child and Adolescent and Psychosexual Psychiatry services are made when relevant.

Monitoring and treatment planning

Weekly meetings are held for reassessing the diagnoses and developing management plans with other team members of the team. Assessment of needs and taking necessary steps for future service development and research are among other activities of the Adult ASD Clinic

Ethics

This study complies with the principles of the declaration of Helsinki. Study protocol is approved by local ethics review committee of Tehran University of Medical Sciences. Written informed consents are obtained from all patients or their caregivers (in case of incompetency of patients) for publication of their data.

Results

Thirty-four patients with Adult ASD were referred to the Adult ASD Clinic during 12 months. All patients, except for one who was a self-referral, had been referred to the clinic by the health professionals. Twenty-three of the patients were referred by psychiatrists, four referred by psychologists and two by neurologists. Four of the referrals were inpatient consultations requested by other psychiatrists.

Patients demographics

Patients characteristics are presented in Table 1. As shown, 28 patients were male, all were single, 22 patients were unemployed and 26 were living with their families of origin.

Table 1.

Demographic characteristics of first 34 cases in adult ASD clinic.

Age (year)	22.78 ± 5.19
Sex (F/M)	6/28
Marital Status (N)
Single	34
Married	–
Divorced	–
Education (N)
Primary	5
High School Diploma	19
University	10
Occupation Status (N)
Student	5
Employed	7
Unemployed	22
Living Status (N)
With Family	26
Living Alone	7
Residential House	1

Chief complaints

Obsession, inattention and sexual problems were the most common symptoms making patients and families to seek help (Table 2). When obsessive complaints were explored in more details, they appeared to be more like ritualistic behaviors or inflexibilities in daily life activities. In general, those who were complaining of inattention, appeared to focus on a topic too deeply that kept them from concentrating on other activities. Sexual problems included masturbating too much, premature ejaculation and having a high sexual desire. Aggressions were typically outbursts of anger and could not be easily associated with common triggers. Odd behaviors particularly in social relationships were reported in 2 patients as chief complaint. Three patients were previously diagnosed for ASD in child and adolescence service and were visited in the adult ASD clinic as they transited in to the adulthood (their chief complaint was reported as transition in Table2) .

Table 2.

Clinical characteristics of first 34 cases in adult ASD clinic.

Chief complaints
Inattention	5
Obsession	8
Aggression	3
Sexual Problems	5
Odd Behaviors	2
Depression	4
Anxiety	3
Transition to Adulthood	3
Hallucination	1
Comorbidities
ADHD	4
SCT	4
Mood disorders	5
Bipolar Disorders	3
Anxiety Disorders	8
OCD	3
Psychotic Disorders	1
Personality Disorders	1
Intellectual Disability	9

ADHD: Attention Deficit Hyperactivity Disorder, SCT: Sluggish Cognitive Tempo, OCD: Obsessive Compulsive Disorder.

Misdiagnoses

Twelve patients had previous diagnoses that were changed following assessments in ASD clinic. Obsessive compulsive disorder was the most frequent misdiagnosis with 5 patients previously diagnosed with it. Four patients had been misdiagnosed with ADHD and four patients were mistakenly treated for schizophrenia. Three patients had a diagnosis of bipolar disorder that changed to ASD.

Comorbide conditions

Table 2 presents frequency of comorbidities in patients diagnosed during clinical interview. Diagnoses were confirmed with structured clinical interview for DSM-5 (First et al. 2016). It is worth noting that almost all patients experienced nonspecific anxiety and depressive symptoms, however the symptoms did not meet the criteria for a separate diagnosis. Similarly, some patients had experiences of psychotic-like symptoms without meeting criteria for a specified psychotic disorder. Average comorbidities per person was 0.97 It should be noted that all patients were psychiatrically stable and did not have any acute symptoms of psychosis when assessed in ASD clinic.

Intellectual disability was another common comorbidity in patients. Intelligence quotient (IQ) was assessed in 28 patients with Stanford-Binet Intelligence Scale. Nine patients had low IQ (lower than 70), nine patients had borderline IQ (70-85) while 10 had IQ above 85. Among those with low IQ, seven patients had mild (IQ: 50-70) and two had moderate (IQ:30-50) intellectual disability.

Discussion

Roozbeh Adult ASD Clinic, the first and only specialized academic clinic in Iran has been set up to address the needs of adults with ASD. Although it is still in its infancy, there are some important lessons learned from the common themes we have identified during its first year of existence which we have highlighted below:

Lack of knowledge

There were only 4 referrals from the inpatient units which is quite low for a 200 bedded psychiatric hospital. Elsewhere, prevalence of ASD in inpatient psychiatry hospitals is reported to be between 2.9 to 9% (Tromans et al. 2018). This can be mainly interpreted by the lack of awareness and knowledge of Adult ASD among general psychiatrists. Interestingly, the majority of cases (20 patients) were referred to the clinic by only 3 psychiatrists who are well known for being exceptionally knowledgeable about adult ASD. There are few studies reporting gaps in knowledge about Adult ASD in healthcare providers (Bruder et al. 2012, Zerbo et al. 2015). According to Bruder et al. only 36% of physicians had previous training on Adult ASD (Bruder et al. 2012). Similarly, adult psychiatrists are reported to be less aware of the ASD phenotype than child psychiatrists (Jones 2000). Oskoui and Wolfson (2012) found that adult neurologists are not comfortable when treating adults with neurodevelopmental disorders. Currently, adult neurodevelopmental disorders are not included in formal curriculum of general medicine or even general psychiatry in Iran and many health care providers consider ASD as a childhood disorder only. Further attempts should be made to increase knowledge of healthcare providers about Adult ASD.

Gender-specific presentations

The majority of patients were male consistent with previous studies showing prevalence of autism 4 times higher in men (Brugha et al. 2011, Fombonne 2009, Loomes et al. 2017).

It is highlighted in recent studies that females are at a higher risk of not receiving diagnosis of ASD compared to their male counterparts (Allely 2019, Kreiser and White 2014, Loomes et al. 2017); i.e. symptoms of autism can be masked in females- which has been recently referred to as camouflage hypothesis. Females with ASD exhibit superficial social skills and gender related normative behaviors and have more tendency to make relationships to appear socially and sexually competent. As a result, they are exposed to situations ill equipped for and may be victim of sexual abuse and harassments (Green et al. 2019, Kreiser and White 2014, Pecora et al. 2016)

We had six female cases of which, three had been misdiagnosed with other psychiatric conditions (one as schizophrenia and two as bipolar disorders comorbid with personality disorders). Due to odd behaviors and social naivety they were exposed to unhealthy relationships and sexual abuse. Camouflaging can be misinterpreted based on the patients’ cultural and religious background and leads to stigmatization. One of the female patients was abandoned by the family as they considered her unsophisticated sexual relationships as prostitution. Lack of knowledge regarding different presentations among female patients had in our opinion contributed further to under-diagnosis or misdiagnosis of such cases.

More researches should therefore be carried out regarding gender differences in ASD as addressing the needs of female population is of great importance.

Multifaceted presentations

ASD patients are a heterogenous group with various manifestations. In fact, many of them do not have typical presentations of ASD like being socially isolated or having repetitive behaviors. Symptoms may vary from person to person in different settings. Reaching an accurate diagnosis depends on gathering detailed and precise information from patients and their families and friends. Furthermore considerable overlap exists between autism spectrum disorder (ASD) and many mental health disorders (Matson and Williams 2013). Misdiagnosis deprives patients from accessing proper treatments such as social skills training and may expose them to unnecessary and inappropriate treatments which may complicate the mix picture of the disease (Trammell et al. 2013). Accurate diagnosis of ASD, as a result, can be challenging when comorbid conditions exist.

Twelve of our patients had been misdiagnosed prior to their referrals to ASD Clinic. Five of patients were previously diagnosed with obsessive compulsive disorder. Patients with ASD have some rituals and stereotyped which may be similar to or be mistaken with compulsions (Hollocks et al. 2019). Three of patients were diagnosed with bipolar disorders due to their socially inappropriate relationships mistaken for being too outgoing or socially disinhibited and having higher sexual desire. Being too talkative or clingy and not appreciating the social situation may mimic pressure of speech in bipolar disorder. Being odd, eccentric, or socially isolated and having stereotyped behaviors or fixed and restricted beliefs make differentiating ASD symptoms from schizophrenia quite a challenge. Yet, adults with ASD use less reciprocal communication and have poorer rapport compared to adults with schizophrenia (Trammell et al. 2013). Similarly, social detachment or reduced social motivation and sharing of emotions may be difficult to distinguish from psychomotor symptoms of depression and social phobia in individuals with ASD (Chandrasekhar and Sikich 2015, Hollocks et al. 2019, Stewart et al. 2006). Considering developmental history and the course of the disease across the life span would be therefore of great importance to differentiate ASD from other mental health disorders.

On the other hand also, due to poorer communication skills many of the comorbid conditions in ASD patients would be overlooked. A recent meta-analysis suggests a higher prevalence of psychiatric comorbidities in adults with ASD compared to general population (Lugo-Marín et al. 2019). ADHD is the most prevalent comorbid disorder in those with ASD, closely followed by mood and anxiety disorders. Several assessments are therefore needed to confirm diagnosis in individuals with ASD (Matson and Williams 2013).

It has been argued that ASD and other developmental disorders such as ADHD, learning disorders and Sluggish Cognitive Tempo¹ may belong to a unified entity and share similar etiologies (Panagiotidi et al. 2019, Duncan et al. 2019, Van Der Meer et al. 2012). Panagiotidi et al., reported a significant association between ADHD and autistic traits (Panagiotidi et al. 2019). Comorbid ADHD will increase morbidity and social dysfunction in ASD (Joshi et al. 2017). Similarly, sluggish cognitive tempo symptoms are reported to be elevated in ASD and also associated with social and daily life skill impairments in adolescents with ASD (Duncan et al. 2019).

Hence, close observation and appropriate treatments should be considered for these co-existing conditions in individuals with ASD.

Employment

As shown in Table 1, most of our patients had at least 12 years of education. Yet the rate of employment was low. According to several studies, adults with ASD have a lower rate of employment in comparison to the general population (Mavranezouli et al. 2014, Roux et al. 2013, Scott et al. 2019). Those who are employed, are involved in part-time and temporary jobs which are not matching their qualifications and are paid less than their co-workers (Scott et al. 2019, Wei et al. 2018). It has been shown that impairments in communication and social interaction and inflexibility and resistance to change can negatively impact job performance of adults with ASD (Hendricks 2010, Hillier et al. 2007). Despite these difficulties, employing adults with ASD can be beneficial for employers in many ways as adults with ASD are reliable and trustworthy, more concentrated on the details (Hendricks 2010) and may have lower rate of absenteeism. Employment improves quality of life of Adults with ASD (Fleming et al. 2013, García-Villamisar and Hughes 2007) and help them develop their identity and independence further. Future studies are warranted to examine employment support interventions in individuals with ASD.

Relationship and sexual life

None of our patients were in a meaningful relationship (all were single). They had few friends and/or social activities. Making relationships is challenging for individuals with ASD due to inability to understand emotional cues and relationship boundaries (Brown et al. 2016). Inappropriate sexual behavior in adolescents with ASD such as too much masturbation, public masturbation, inappropriate romantic gestures, obsession with certain objects and paraphilia, exhibitionism and inappropriate comments with sexual connotations have been reported (Beddows and Brooks 2016). They may also take part in illegal activities like stalking unintentionally which may put them in trouble with law (Hannah and Stagg 2016). They are also more vulnerable to sexual abuse and victimization (Brown-Lavoie et al. 2014) as they cannot easily discriminate safe and unsafe relationship (Higgs and Carter 2015).

Besides, a considerable number of our patients (n = 4) had sexual complaints and their first contact with the health care professionals was through the psychosexual clinics. They articulated their chief complaints as masturbating too much, premature ejaculation and having a high sexual desire. However, thorough assessments revealed that they did not have a true understanding of these symptoms and that they were unable to communicate their problems very well. Obsessive tendencies in such patients resulted in too much focus on their normally developing sex-related behaviors. This is in line with the new evidence in the literature that a relation exists between autism traits and gender self-concept (Kallitsounaki and Williams 2020).

Providing sex education will be beneficial for adults with ASD to learn sexual and social norms and protect them from potential abuse. Moreover, researches are needed to fill the gaps in our knowledge about patterns of sexual behavior in individuals with ASD and its correlates.

Limitations

There are a number of limitations for our study which make generalization of our results with caution. We did not have all needed validated instruments to use in our assessments. As part of this, there are also very few studies with acceptable methodologies to draw conclusion as to what set of instruments are needed for clinical assessment. Many instruments that are used worldwide (e.g. Autism Diagnostic Interview, Revised (ADI®-R) and Autism Diagnostic Observation Schedule (ADOS)) have not yet been translated or standardized for use in Persian. Lack of a national screening system to detect developmental challenges early in life leaves many patients and their families undetected until adulthood and therefore our referrals are a heterogenous group of patients with various levels of impairment and clinical needs. Another likely limitation of our study is perhaps loss to follow-up; we could not complete our assessments in 6 patients as they did not continue their treatments.

Conclusion

ASD is a complicated heterogenous clinical entity with many overlaps and co morbidities with other psychiatric and developmental disorders. Knowledge and training of psychiatrists as well as other mental health professionals on adult ASD seem to be significantly inadequate. There is virtually no specialist clinical and/or rehabilitation facilitates to help with this vulnerable group of patients in Iran. The complexity of the clinical presentation, heterogeneous nature of the condition and a lack of universal treatment strategies highlight the need for an individualized but holistic management plan as well as adopting novel strategies such as the precision medicine approach suggested by Missouri Autism Consortium (2016) to help improve service provision for this vulnerable group of patients

Disclosure statement

No potential conflict of interest was reported by the authors.