We Need To Talk about Autism & Parent-Carer Blame {Book Review}

I think it’s fair to say that the words blame, judgement and shame probably feature often in the lives of parents and carers of autistic, neurodivergent and SEND children and young adults. We Need To Talk about Autism & Parent-Carer Blame is a book that explores the different ways blame can show up, while offering guidance on how parents can respond to it.

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The author, Alice Running, is an autistic mum of two neurodivergent children. Her first book was published a few years ago and there’s a review of that on my blog here: Helping Your Child with PDA Live a Happier Life.

In 2022, Alice conducted a large scale survey (over a thousand participants) and published a report on the subject of blame and PDA. Eighty-eight percent of the responders said they felt blamed by service professionals for the presentation of their children (read the report here: Parental Blame and the PDA profile of autism, Running & Jata-Hall). The report is comprehensive and includes many quotes from parents and carers who responded to the survey.

In the introduction Alice sums up the reason for this book:

Due to the 'hidden' nature of autism, autistic people and their families can be susceptible to receiving blame instead of support. Services and (some) professionals can seek to blame parents for their child’s autistic presentation, rather than provide access to basic services such as education and healthcare, because professionals don’t always observe what they consider to be the 'correct pattern of traits' or responses to 'intervention'.

We Need To Talk about Autism & Parent-Carer Blame has nine chapters as follows:

1. Friends and Family
2. School
3. Assessments
4. Meetings and Parent-Led Advocacy
5. Social Care
6. Serious Allegations
7. Parent-Carer Accounts of Blame
8. Are All Parent-Carers Blamed Equally?
9. The Aftermath of Being Blamed

The friends and family chapter looks at varying relationships, including those from the school playground, neighbours and community, partners and ex-partners who are disbelieving of any diagnosis. There's a couple of pages on how to cope with blame from friends and family, and some advice for professionals around how they can help.

Attendance, school systems, punishments, restraint and seclusion, suspensions and exclusion are all topics that are discussed in the School chapter, with a small mention of home education and why so many families with autistic children make the move away from schools as an education path.

Alice highlights how and why the blame tends to happen:

In my personal experience, I have found that it doesn’t really matter where an autistic child communicates their distress (at home or school), as the parent-carer is often viewed as the cause. If an autistic child is in distress in the school environment, then parent-carers are often contacted and spoken to about their child’s 'behaviour'. Parent carers are often in a lose-lose situation. If an autistic child is communicating distress at home, then it is viewed as a home problem. If an autistic child is communicating distress at school, then it is viewed as a home problem. There seems to be a real lack of awareness by school staff as to how a typical school environment or non-inclusive daily interactions with autistic children can effectively 'disable' a child by causing them acute levels of distress.

It would follow then that specialist schools or autism-specific schools would recognise autistic communications of distress, and support autistic pupils/students effectively enough for parent-carers not to be blamed for 'normal' autistic presentations. My experience has been otherwise.

The serious allegations chapter opens with some interesting statistics about the use of child protection investigations and continues on to consider aspects such as neglect and/or emotional harm, permissive parenting, disguised compliance and fabricated and induced illness (FII). Alice explains how and why many parent-carers of autistic children are mis-identified as fitting FII criteria; this chapter in particular is an eye-opening and at times almost scary read. 

There are some case studies in chapter 7 (that I know are not one-off examples) of how families have been blamed and targeted, particularly if they have made complaints against any services. In chapter 8, Alice looks at the complexities of intersectionality and parent-carer blame, whilst noting that research on this is lacking. To finish off the book, the aftermath of what many parent-carers experience in terms of blame and the effects on both physical and mental health are discussed. I think it's true to say that I've had to think carefully about all my dealing with services for our PDAer over the years and that has definitely had a psychological impact - there's a blog post on that waiting for me to have the energy to write it to be honest.

At the end of most chapters in the book there is a summary with advice for parent-carers and separately, advice for professionals. For example, in the school chapter, one bullet point for parent-carers reads "Maintain your own log of school experiences. This could be a diary, chronological record or list of each breach of support plan or incident of distress". And for the professionals "Listen to parent-carers with an 'open mind' - 'problems at home' does not equate to 'problems with parenting'.

The whole book is very factual, drawing on responses to the survey, and it should not be viewed as an attack on professionals in any of the systems that SEND parents have to interact with. In her introduction, Alice acknowledges that there are 'competent, knowledgeable and understanding public service professionals'. I would back this up with my family's experience; we have met with both 'great' and 'not-so-helpful' people during our SEND journey. 

We Need To Talk about Autism & Parent-Carer Blame is a powerful book for both parents and professionals, that could lead to increased understanding of difficult situations. Available now from Amazon: We Need To Talk about Autism & Parent-Carer Blame