The exclusion of Malaysian women with ADHD

Photo by Afiq Fatah on Unsplash

Like many other women’s issues in Malaysia, Attention-Deficit/Hyperactivity Disorder (ADHD) in Malaysian women is disregarded at varying levels. With little to no discourse on this matter, challenges faced by women with ADHD are swept under the rug.

This blog post analyses the exclusion of women with ADHD in Malaysia in three parts. It explores the accessibility of formal diagnosis, followed by the recognition of ADHD as a disability in Malaysia, and the implications of Malaysia’s reservations on the Convention on the Rights of Persons with Disabilities (CRPD) and the People with Disabilities (PwD) Act.

ADHD in Malaysia

According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), ADHD is:

“[a] persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development.” (2013)

In Malaysia, experts believe that the proportion of individuals with ADHD is higher than the recorded percentage of 3.9%. The low percentage can be attributed to Malaysians’ limited mental health literacy and the influence of culture and gendered beliefs.

In a study conducted by Loo et al. (2012)¹ , Malaysian participants expressed belief that childhood ADHD is caused by exogenous factors, e.g. the lack of discipline or the act of wanting attention (p. 122). The findings showed that social support is the preferred treatment due to the failure in “[recognising] the problem as a mental disorder” (p. 123).

The higher rate of diagnosis among boys in comparison to girls² reflects the way girls internalise ADHD differently from boys. Girls with ADHD often mask their symptoms because of the pressure to act a certain way. The expectation differs from the stereotypical ADHD behaviours found in boys. Compounded by parents’ inability to recognise ADHD behaviours and societal expectations, girls with ADHD are often left undiagnosed until adulthood.

Moreover, a formal diagnosis for ADHD is hard to attain. Stemming from the policy whereby only psychiatrists are authorised to formally diagnose, individuals are left with two options: private and public pathways. With the private pathway being expensive and the lack of attention given to adult ADHD in a public pathway, people with ADHD have limited choices.

According to Malaysian mental illness solidarity network SIUMAN, this absence of options is because of the lack of funding for mental healthcare. This has resulted in practitioners being underpaid and overworked while unable to upskill.

Additionally, Dr Hazli Zakaria, a psychiatrist, stated that it is difficult to diagnose an adult with ADHD, as some psychiatrists don’t believe in adult ADHD (as cited by Aznim Ruhana, 2018, para. 26)³. He explained that one of the challenges in diagnosing adult ADHD is the presence of comorbidities where there is more than one diagnosis found. Because of the failure to address ADHD, a misdiagnosis will most likely happen and the challenges faced by the individuals will continue to occur.

The lack of information and knowledge about adult ADHD means that women with ADHD remain excluded from diagnosis. Late diagnosis is harmful as, untreated, ADHD can lead to other mental conditions such as anxiety disorder and depression.

ADHD as a disability

In Malaysia, the Social Welfare Department (JKM) classes ADHD as an intellectual disability. Despite this recognition, the application process for disability status remains inaccessible, due to the registration form itself and the guidelines provided.

The classification of ADHD as an intellectual disability remains a question for adults with ADHD. In adults, ADHD tendencies affect work and routine more than the act of learning. JKM acknowledges the lifelong challenges due to inattentiveness and/or hyperactive-impulsive tendencies, but why is it still categorised as an intellectual disability? Even the DSM-5⁴ views intellectual disorders and ADHD separately under neurodevelopmental disorders.

Moreover, according to JKM, first-time applications require the submission of a Persons with Disabilities Registration Form (BPPOKU-Pindaan 2019), signed by a registered medical officer under the Malaysian Medical Council (MMC) or a medical expert on the National Specialist Register of Malaysia (NSR).

The barrier to registration arises when the guidelines available are not comprehensive. According to a JKM personal relations officer, IQ tests are required based on the intellectual disabilities category and the condition of the applicants. The officer also stated that public or private medical practitioners can certify intellectual disabilities. These statements illustrate the vague or arbitrary nature of information given by JKM, as its website fails to mention the need for IQ tests or the BPPOKU-Pindaan 2019 form for any of the intellectual disabilities listed. If a medical practitioner can approve the applicant’s intellectual disability, why is an IQ test required? The requirement of an IQ test itself is exclusionary due to its expensive cost.

Furthermore, as listed on JKM’s website, the objectives for applying are:

to know the amount, the distribution, and the categories of the OKU [orang kurang upaya, or people with disabilities] in Malaysia for programme planning and preventative, educative, habilitative, rehabilitative services and training ;
to plan the suitable provision of facilities with the need of the OKU;
to allow the registered OKU to access appropriate services with their needs based on their level of functionality/disability.

Therefore, the incomprehensive form and exclusionary process hinder the State from achieving its main objectives. The data needed to address the listed goals will remain distorted and the exclusionary cycle will continue.

CRPD and PwD Act

In its declaration to CRPD, Malaysia states that:

“its application and interpretation of the Federal Constitution of Malaysia pertaining to the principles of non-discrimination and equality of opportunity shall not be treated as contravening articles 3(b), 3(e)⁵ and 5(2)⁶ of the said Convention.”

The shortcoming of the declaration is the absence of reference to persons with disabilities in Article 8(2) of the Federal Constitution.

Similarly, Malaysia’s Persons with Disabilities Act 2008 (PwD Act) has been constantly called out as a failure in protecting the rights of the disabled.

Under Section 29 of the legislation:

Persons with disabilities shall have the right to access to employment on equal basis with persons without disabilities.
The employer shall protect the rights of persons with disabilities, on equal basis with persons without disabilities, to just and favourable conditions of work, including equal opportunities and equal remuneration for work of equal value, safe and healthy working conditions, protection from harassment and the redress of grievances.
The employer shall in performing their social obligation endeavour to promote stable employment for persons with disabilities by properly evaluating their abilities, providing suitable places of employment and conducting proper employment management.

However, based on a survey conducted by Women’s Aid Organisation (WAO) and Vase.ai on the discrimination faced by Malaysian women seeking jobs, “20% of women with a permanent disability were told by their interviewer/recruiter that they should consider freelancing instead as their disability was an issue.” (Sheng, 2020)⁷.

The survey’s findings proves the claim in the General Comment No. 3 on Article 6:

“women with disabilities [do] face unique barriers to their equal participation in the workplace, including … the lack of access to seek redress because of discriminatory attitudes dismissing their claims, as well as physical, information and communication barriers”.

The State has failed to deliver on its commitment to implementing the Convention and the Act. As stated by the Malaysian Information Network on Disabilities (MIND), the PwD Act does promote the protection of rights for the disabled but there is also an absence of penalties for violations of the Act. Besides that, Sections 41 and 42 of the Act protect the government and public servants from being sued for their incompetence in fulfilling their obligations towards the disabled (Harapan OKU Law Reform Group, 2019; Abdul Fareed Abdul Gafoor, 2019; MIND, n.d.). Thus, the autonomy and rights of persons with disabilities will continue to be violated due to impunity enjoyed by State bodies, leaving the community without any chance of redress and justice.

As a Malaysian woman with ADHD, it is disappointing to see the State’s lack of care for women with mental disorders and disabilities. It is clear that we are not priorities for the State, and based on the current hierarchical and patriarchal systems, Malaysian women with mental disorders and disabilities will continue to be silenced and left out.

Batrisyia Azalan is a Social Sciences student from Monash University Malaysia and is passionate about mainstreaming women with disabilities within the broader discourse of women human rights. She served as IWRAW Asia Pacific’s Communications Intern in 2021/2022.

Footnotes

1
Loo, P. W., Wong, S., & Furnham, A. (2012). Mental health literacy: A cross-cultural study from Britain, Hong Kong and Malaysia. Asia-Pacific Psychiatry, 4(2), 113–125. https://doi.org/10.1111/j.1758-5872.2012.00198.x
2
ADHD signs in girls. MIND. https://mind.org.my/article/adhd-signs-in-girls/
3
Aznim Ruhana Md Yusup. (4 September 2018). “Grownups have it too; the struggle for mental calm of adult ADHD sufferers”. New Straits Times. https://www.nst.com.my/lifestyle/heal/2018/09/408016/grownups-have-it-too-struggle-mental-calm-adult-adhd-sufferers
4
Diagnostic and Statistical Manual of Mental Disorders (DSM–5) is the a manual for assessment and diagnosis of mental disorders used by the Clinical Practice Guidelines (CPG) from the Ministry of Health to diagnose ADHD.
5
Article 3 – General Principles 3(b): Non-discrimination 3(e): Equality of opportunity
6
Article 5 – Equality and Non-discrimination 5(2): State parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds
7
Sheng, L. (3 November 2020). “Anti-discrimination provisions in Employment Act must extend to job seekers and include disability status”. Women’s Aid Organisation. https://wao.org.my/anti-discrimination-provisions-in-employment-act-must-extend-to-job-seekers-and-include-disability-status/