Opportunities for policy / law input and articles on mother blame in autism service provision.
Campaign to Challenge Blame 2024
Happy Autumn! Here is my monthly newsletter for October, with another selection of article links and participatory links that may be useful in challenging (parent-carer) blame within autism-based service provision.
Related Articles
I’m currently preparing a chapter contribution around blame and social work practice. The following links are taken from my reading around this subject. I’m presenting them with little critical analysis as my primary focus for this newsletter is empowerment - if you are affected by blaming narratives whilst attempting to source useful and appropriate autism-based support, then the research and article links I provide may help contextualise your experience (and help with internalising blame). They may also help any associated legal support in understanding the systemic nature of blame that autistic families often face.
Citation - Laurin, E. (2023) Mother blame and emotion work: a sociological study on Swedish mothers of children with long-term school absenteeism, Emotions and Society, (XX(XX): 1-18, DOI: 10.1332/26316897Y2023D000000008
This article presents analysis of interviews with 31 Swedish mothers with ‘school-absent’ children and the emotion-work undertaken by the mothers as they navigate the education and social care systems in support of their children. All of the children are neurodivergent (ADHD and / or autistic).
The key themes arising in this article are of mother-blame, the high level of responsibility placed on the mothers to obtain support for their children (which Laurin likens to a professional role) and the expectation for mothers to do this in a way that is perceived as calm and rational by state professionals. The article also discusses the differences in emotional presentation between working class and middle class mothers and how that potentially impacts mother blame.
Laurin writes how previous studies show that mother blame is particularly directed towards working-class, disabled mothers, mothers of colour and single mothers.
Laurin considers how mothers interviewed often worked hard to contain their own emotions of frustration and anxiety at the systems in place, to present a calm and rational interface when interacting with professionals. Mothers with greater access to social capital (friends and family) and cultural capital (Laurin suggests that middle class mothers have been raised to manage emotions in a way that aligns more with professional expectations) may find it easier to meet the expectations of professionals (in terms of emotional regulation) thus avoiding aspects of mother blame.
The article presents the direct experiences of several mothers and is useful in highlighting how difficult and bureaucratic navigating systems of support can become, with one mother sharing how she was required to attend three meetings per week, leading to (rational) worry about having time for paid employment.
The neurodivergence of mothers interviewed is not stipulated so there may be further intersectional experiences involved with the emotion work performed by mothers interviewed (the differences with emotional expression in neurodivergent mothers for example, and their masking or not of such).
Citation - Mitra, Barbara Dr (2022) “It’s not Autism. It’s Your Parenting. An Autoethnographic Exploration of the Relationships Between Professionals and Parents of an Autistic Child in the UK,” Ought: The Journal of Autistic Culture: Vol. 3: Iss. 2, Article 6. DOI: 10.9707/2833-1508.1091
In this article Dr Mitra shares how her parenting was often blamed for her son’s autistic presentation and details how her experiences of receiving such blame impacted her family. Dr Mitra discusses the diagnostic process and shares how her son’s diagnostic profile came to also include a PDA presentation (alongside autism).
Throughout the article, personal aspects of interactions with health and school professionals are considered by the author as she ‘paints a familiar picture’ of parental blame, professional misunderstanding of autistic presentations, refusal of support requests, school exclusions, family trauma and Child Protection interventions.
I found the section reflecting upon interactions with Child Protection professionals to be illuminating and validating, particularly when the author discusses how individual professionals with a seemingly more competent understanding of autism quickly aligned with narratives of parental blame within the context of a Child Protection conference (when previous reports were focused upon the needs and presentation of the author’s autistic son rather than parental blame).
Dr Mitra presents an overall situation whereby her expertise as a parent was not heard, resulting in unnecessary familial stress and the needs of her son not being adequately supported.
Provide your input:
Here are two opportunities to contribute towards future policy that affect the lives of autistic children, young people and their families.
Department for Education - Curriculum Review
Views and evidence are sought regarding improvements to the (UK) curriculum and assessment system. To provide your views - CLICK HERE. (Note: the survey closes 22nd November 2024)
As parents to autistic young people (and as autistic adults) we are aware of how difficult and exclusionary the curriculum and assessments for qualifications can be. This is an area that I have previously expressed my concern about, having a young person for whom the traditional route to acquiring qualifications is not adequate for his learning style.
Earlier this month I wrote:
Is there such a thing as a truly neuro-accessible, recognised qualification or exam pathway?
If there is a more accessible pathway, I haven't discovered it. It seems to me that qualification accessibility is based upon issuing a range of reasonable adjustments for exam conditions and relying on individual students to assimilate, using their best endeavours.
And what does that really assess? The students who can conform or suppress their innate differences for an allotted timescale? The students whose anxiety does not overwhelm them? The students whose support needs are minimal or fit best with what exam boards are prepared to offer?
Assessments are riddled with inequity.
School age students are typically routed through GCSE or Foundational Skills pathways (in England) - and neither are designed to allow a neurodivergent mind to thrive.
Attempting to achieve the workforce core qualifications set (English and Maths) is almost impossible for students who communicate less through speech and writing and more through physical or visual modes of expression. Trying to demonstrate knowledge and intellect through examinations that are designed to quantify neuronormative communication skills, only serves to destroy self esteem.
Whichever qualification route I attempt to source achievement for my son through, eventually becomes a mish-mash of 'the best we can do' adjustments. Yes, we can access an exam online, but there is little support to utilise the technology on exam day. Yes, we offer a Functional English qualification, but supporting an anxious speaker in the way that he needs is not allowed.
It seems to me that to achieve a workforce baseline qualification, a student's neurodivergence must be able to fit within the non-neurodivergent parameters of assessment.
I would love to see a range of neuro-accessible qualifications developed. Ones that can be delivered in a multitude of adapted ways, and where the content enables the best of neurodivergent aptitude and thinking. Qualifications that can be accredited by exam, or coursework, or evidenced by a portfolio to best suit the needs of each individual student.
We also, as a society, need to shift away from what is recognised as the baseline workforce standard and include alternative accreditations or examples of merit. Yes, some forward thinking employers do, but many professions do not.
University's are beginning to recognise that the standard qualification-based pathway only suits some people whilst excluding many others, with some 'red brick' universities offering alternative entry requirements in recognition of this. But what about those students who don't want to enter the higher education system? The apprenticeship routes that I have seen ask for minimum qualifications; the DWP 'access to work' scheme is reportedly running on lengthy waiting periods, and who knows what will happen to Personal Independence Payments in the near future.
Accessing EOTAS and having the best educational support package is only time limited. What happens when that ends? How does my son prove his talent to the world when the world only wants skills that are packaged into quantifiable qualifications?
Law Commission consultation on disabled children’s social care law.
The Law Commission for England and Wales has been tasked with reviewing the legal framework governing social care for disabled children in England.
To access and input your views - CLICK HERE. (Note: the consultation closes 20th January 2025)
Parent-carers often share how access to social care services for their autistic children (such as respite or PA provision) can be inappropriately assessed through generic social care assessments which are based on screening for safeguarding issues and are carried out with practitioners with less knowledge around disability. Additionally, parent-carers also share how disability specific social work teams can lack the appropriate autism knowledge and competency, also leading to assessments based around safeguarding not support. Parent-carers also share how disabled social work teams refuse to assess autistic children and young people by categorising them as not meeting the criteria for disability-specific support. Narratives that blame a rife throughout this process, leaving autistic families at a disadvantage in accessing the social care support they are entitled to.
Until next time,
my very best wishes,
Alice X