Educational Neglect or Blame Shifting?

Recently, we are seeing more and more neurodivergent families being subject to child protection planning under the category of educational neglect because their young people are unable to attend mainstream schools.

The Department for Education (DfE) has stated, ‘persistent failure to send children to school is a clear sign of neglect’. The NSPCC has cited, ‘failure to ensure regular school attendance which prevents the child reaching their full potential academically’ as one of their six forms of neglect.

We know as parents and professionals that schools are often a source of trauma for young people, sadly not every professional does know this.

There is ample research to suggest that poor school attendance is an indicator of neglect or abuse (Baginsky. M., 2008), however, this is not specific to Autistic children. This does not mean that Autistic children are never victims of neglect or abuse, in fact the opposite is sadly true (McDonnell., et al. 2019), professionals must be armed with all the necessary knowledge and experience to make holistic assessments because in my opinion, when in relation to Autistic experience, a child not attending school may well be a protective factor instead of a risk. This is because there are many environmental aspects to consider in regards to Autistic children because outcomes for Autistic children are largely the sum of the child’s specific profile and their environment.

Autism + Environment = Outcome (Beardon. L, 2019).

Sensory differences also need to be considered and the impact that a school environment can have on an Autistic child and subsequently their ability to attend school. Sensory differences are part of the DSM-V, diagnostic criteria for Autism (APA,2013).  An Autistic person may be hyper or hypo sensitive to sensory input, or a mixture of both, which can fluctuate dependent on environmental and other factors (O’Neill, M., & Jones, R. S.1997).

Sensory trauma may occur when Autistic students are continually exposed to input that overwhelms them, such as busy environments and participating in what would be considered day to day life for a child with the predominant neurotype. Some research posits that sensory trauma should be understood as an Adverse childhood Experience (ACE) and as such can affect self-concept, self-esteem, mental and physical health, family, friendships, education, relationships and life chances, notwithstanding toxic stress and a daily experience of fear that is induced by sensory trauma (Fulton et al., 2020).

Autistic masking is experienced by every Autistic person, it is the action of projecting what you feel is acceptable in a particular environment because you feel unsafe or anxious, prolonged masking is incredibly energy depleting and considered a contributing factor to Autistic burnout (Raymaker., et al. 2020). Masking is not always something an autistic person can choose to do or not do. Masking can also be responsible for what is characterised as low-level disruption/class clown behaviour as the person will have assessed their surroundings, what is expected of them, know they cannot project this and opt for a different mask. The main driver of masking is thought to be rooted in social safety (Pearson, A., & Rose, K. 2021).

Autistic burnout is another factor that is not widely understood, likely because first research into Autistic burnout was only published in 2020 yet, anecdotally within my Autistic community that I have been a member of for over eight years, it is a well-established concept and common experience for Autistic people. Autistic burnout is characterised as a debilitating presentation that impacts on a person’s ability to attend to day to day living and can lead to poor mental health outcomes, even suicidality. It has been suggested that autistic burnout is a product of prolonged masking and living in an unaccommodating environment that is designed for those with a predominant neurotype (Raymaker et al. 2021) which could also include experiencing the above-mentioned sensory trauma.

Autistic students with a less understood, pathological demand avoidant (PDA) profile face even further difficulties accessing the school environment than Autistic children without a PDA profile. The PDA Society reported that 70% of children with a PDA profile struggle to attend school regularly, there are many reasons Autistic students struggle in education but, for children with a PDA profile they face all of the same difficulties as Autistic children but also are resistant to any demand or perceived demand, this means structured school life, where they are unable to follow their intrinsic motivations in line with theory of monotropism (Murray, D., Lesser, M., & Lawson, W. 2005) are further impounded by an anxiety  response to any demand imposed on them even if it self-created.

This is just a brief outline of some of the many reasons autistic children may not be able to access a school environment, none of which are caused by parental abuse or potential parental abuse. All of the above barriers to education can be significantly reduced or even eliminated by making the necessary adjustments to the autistic persons environment. Professionals should be examining the environment.

Within the field Autism in the western, white, European world there are two dominant yet opposing models of disability at play. The medical model of disability asserts that a disabled person is impaired and must be fixed, treated or cured. The social model of disability states a person is not disabled until they encounter an environment or attitude that disables them (Marks. D., 1997). If we apply the social model of disability and look at environmental factors to regarding school attendance difficulties this would not only resolve child protection concerns and avoid parental blame but also ensure autistic children are accessing education suitable to their needs. However, bullying via child protection planning is significantly cheaper than providing school places to meet the needs of all children with SEND which is a local authority statutory duty.

One potential avenue is to broaden the understanding of the assessing professional to include the social model of disability would be focussing on workforce development to support autistic children and families. However, issues regarding budget, training and knowledge means that this is unlikely to be established any time soon without significant investment in services. The government has pledged £74.88 million as part of their policy named “The national strategy for autistic children, young people and adults: 2021 to 2026” (Department for Health and Social Care & Department for Education, 2021), while this may sound like a sizeable investment, based on the most recent figures available there are over 962,000 people working full time, in state schools in England (Office for National Statistics, 2022), this is not including Local Authority employees that work directly with children and young people or NHS staff, even if this entire budget was invested in training alone the per head figure, in my opinion wouldn’t be enough to reach the depth of knowledge and training needed to resolve the current issues.

What we are left with instead is more parent blame, unnecessary child protection planning, trauma and bullying.

This is the issue with law, policy and guidance. This should not be happening, we have the EHCP process to stop these things happening, but parents are consistently faced with barriers to accessing these processes which is then reinforced by a complete lack of accountability.

The fight continues, do services really want to help autistic people or are they paying lip service to save face while secretly sticking to a well-trodden path of victim blame and victimisation because resources are more important than lives?

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596

Baginsky, M. (2008). Safeguarding children and schools. Jessica Kingsley Publishers.

Beardon, L. (2019). Autism, masking, social anxiety and the classroom. Teacher education and autism: A research-based practical handbook.

Department for Health and Social Care & Department for Education, 2021. National strategy for autistic children, young people and adults: 2021 to 2026. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear. Autism Wellbeing CIC.

Marks, D. (1997). Models of disability. Disability and rehabilitation, 19(3), 85-91.

McDonnell, C. G., Boan, A. D., Bradley, C. C., Seay, K. D., Charles, J. M., & Carpenter, L. A. (2019). Child maltreatment in autism spectrum disorder and intellectual disability: Results from a population‐based sample. Journal of Child Psychology and Psychiatry, 60(5), 576-584.

Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139-156.

Office for National Statistics. (2022) School Workforce in England   https://explore-education-statistics.service.gov.uk/find-statistics/school-workforce-in-england

O’Neill, M., & Jones, R. S. (1997). Sensory-perceptual abnormalities in autism: a case for more research?. Journal of autism and developmental disorders, 27(3), 283-293.

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., … & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood, 2(2), 132-143.

To enquire about an independent social care assessment or book a consultation, please email: MaryCartlidge.ISW@gmail.com or AdkinTanya@Gmail.com  

Click the image below to join us for our FREE Q&A on 13th September 2023

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Guide Five: RADICAL CONNECTION - Neuroparenting with Kristy Forbes & Jodie Isitt

Kristy and Jodie have worked together for a number of years and are completely aligned in their parenting, and in fact all round beliefs. Creating neuro-inclusive spaces, using neuro-affirmative approaches as standard. 

Week 3: Reasonable Adjustments

The pathway of SEN / EHCP’s / Reasonable adjustments and so forth can be a scary and bewildering place. But knowledge is POWER and this session aims to provide members with this power. 

Attendees will be given clear information and knowledge so they will be able to navigate these pathways armed with confidence. This will include basic law and children’s rights including ideas about what reasonable adjustments vs unreasonable adjustments are. We give examples of our own reasonable adjustments, how to ensure these adjustments are put in place and ideas on how to approach the professionals in your children’s lives to ensure that their needs are met. 

Members will also be equipped with ideas for “reasonable adjustments” versus “unreasonable adjustments”. A guest expert speaker – Karen Stepanova – SEN Consultant is arranged for this week who will give her very own presentations on the basics of SEN Law.

Week 4: Mental Health

In this session we look at how Imposter Syndrome can cause people to doubt their abilities.

The toll of advocating for children with additional needs can be detrimental to a parent or carer’s health. Our aim is to build up confidence and restore the mental health of parents or carers so that they have the inner strength to fight as hard as they can for their children.

This week focuses on changing negative thoughts to positive ones and helps restore the mental health of attendees. Jodie and Laura provide ‘Top Tips’ to staying mentally well during tricky times.  

Week 5: No-one can help me

What can I do? By week 5 we hope that all attendees will feel more confident, less stressed and have the skills and facts that they need to successfully advocate for their children. But we know that sometimes this is not enough.

The system can be fraught with challenges, and no matter how skilled you are, it can feel like your journey keeps being taken off track. In this session, an expert speaker will join to give fantastic advice on where to turn next when you feel you have exhausted all avenues. Practical advice regarding matters such as benefits, grants and additional sources of advice is also given, leaving the attendees feeling well equipped in their journey ahead.  

Guide Three: I'm Giving Up

Making sure that consistency is key, as our young people will not learn to trust us if we do not show them we are trustworthy. So making sure that when we start this process, we are committed to making it as successful as we possibly can.

Gaining trust, and keeping it is extremely important, however we all make mistakes, we will get triggered at some point, it is how we manage those mistakes that count. We are so used to being judged for our parenting choices, that throughout this session you be inspired to take back control of who you are, and give you the confidence to shut out the negative and leave more room for the positive.

Guide Two - Trust Your Gut

Guide Two: Trusting your instincts is a vital part of the process for RADICAL (UN)Parenting and we will discuss the many experiences of the facilitator and the learners where this has either proven to be true when listened to or when you wish you would have listened and acted on that gut feeling.

Briefly discussing methods of communication for the neurodivergent person and how important it is to study our young people intently so that we can begin to talk their language.  This session guides you back to your most confident, enabling those advocacy skills to flourish once more and encouraging you to always trust your gut.

Radical Guide Four: F*ck That Sh*t

Tuning out all the negative interference from around you will be crucial to enhancing your progression through this change, and this is something that will be difficult for a lot of families particularly when people are not yet ready to accept the RADICAL approach. Ditching the negative impacts on your parenting so that you can be free to be you. No shame. No judgment, just unapologetically you!

Join us whilst together we chant:   

F*ck That Sh*t

Week 1: Introduction to ASC

We will explore the many aspects of being autistic or having an autistic family member. Jodie will share her road to diagnosis for her three children and finally herself and her own diagnosis in 2020 at 35 years of age.  This first week will lay the foundations for the rest of the Five week programme. 

Week 3: Worrier to Warrior

In this final session, we will help you and those you support to find ways to reframe negative thoughts so that it is possible to “think better and feel better.”  We will also cover practical strategies to help you manage your anxious self, keep calm and turn you from a worrier, to a warrior, ready to battle everything that life throws at you.

Week 2: Differences I May Experience

Focussing on the saying, “When you have met one autistic person you have met one autistic person” we will take a deeper dive into the way that autism effects everyone individually.  During this session we will look at sensory needs in more detail and provide some ideas to help keep autistic children more regulated.

Week 3: Advocating For My Autistic Child

Laura and Jodie feel that “small changes make a big difference” for autistic individuals – and during this session we will discuss helpful tips for parents and reasonable adjustments for schools and colleges. 

In this session you will also be able to ask us questions relevant to this topic and we will signpost you to other helpful organisations and sources of information related to Autism. 

Week 4: Sibling Support

There is no doubt that an autism diagnosis can affect the whole family.  In this fourth session we will explore the impact autism can have on families and siblings.

We will discuss lots of helpful approaches to help you support your whole family and explore the positive aspects of an autism diagnosis.  We will also discuss how to support siblings of autistic individuals using empathy and understanding whilst also covering the importance of looking after your own mental health as parents.

Week 5: The Autistic Experience

Chloe, Jodie and Laura will discuss the medical model of autism and some of the theories of autism which are now proven to be out-dated and detrimental to autistic individuals.

Chloe will talk using her personal insight as an autistic adult, will discuss effective ways to support the mental well-being of autistic individuals and answer questions from attendees.

Week 2: Nurturing Anxious Minds

Whilst it is true that many children suffer from anxiety at any one time, those who are neurodivergent (ie are autistic, with or without PDA; have ADHD, dyslexia, dyspraxia etc) are more likely to have anxiety to varying degrees as part of their experience.  In this session, the anxiety experienced by any child is approached with understanding and acceptance and is jam-packed with practical ways to support children in a positive and nurturing way.

Week 1: Understanding Your Anxious Self

In this first session, Laura and Jodie gently introduce what anxiety can look and feel like with a real and tangible understanding that all participants come from a variety of experiences. Together, we will look at the impact anxiety can have on how we behave and interact with different people as well as the internal struggles it can bring.  By offering an invitation to reflect on and recognise our own anxiety and the negative internal voices that drive it, they begin to consider ways to quieten those voices and fears both for ourselves and those we wish to support. 

Week 2: Nurturing Advocacy Confidence

The aim of this session is to break down attendees’ advocacy skills, then rebuild them so that facts and controlled emotions are used successfully.

Laura and Jodie share their experiences of advocating for their children – both good and bad and demonstrate how to use assertiveness skills effectively and remove emotive language.

They also share their “Top Tips” before, during and after transitions to ensure that all objectives are achieved.