Shame stories: breaking the cycle of parenting shame in Autistic families

This post was written by Jenni Guthrie and was originally published on Autistic Social Worker.

I wrote this reflection following a discussion with my mother a while back. What she said sat with me for a long time and this blog tries to unpick where shame infiltrated our stories as parents.

I then look at how shame may be an influencer in my role as a social worker and what we need to challenge when working with Autistic families.

“You had a good childhood, right?” It came out of the blue. No lead-up or hint it was coming. But clearly, this was a question my mum felt she had to ask me.

And what did I do?

I lied.

“Yeah Mum, it was OK”.

The question had hit me with such a force in two ways. The first was because my childhood had been awful; challenging, harmful, and abusive. But the second was because I felt the pain and uncertainty in her voice. This was something that she also didn’t believe but needed reassurance from me.

I need to be really clear at this point. My mum is my hero. She faced so much adversity due to poverty, ableism, domestic abuse, and other things whilst trying to give us our basic needs. My mum had been my protector, my champion, and at times my voice (when I let her) and I had never really told her this.

What I heard loud and clear though within these words and her response, was shame. She was ashamed of how she had not provided material things other kids growing up in the 1980s had. She had to work and leave us with people who were not the best childminders (to say the least) or take us to her work and disrupt our routines. She made meals last several days but also made sure we could access our individual interests as much as possible.

She also didn’t parent in the way other parents did. She knew that. She isn’t openly affectionate. She is an incredibly private person. She never says “I love you” spontaneously. But she also got involved in what we liked to do – on the sidelines. She would challenge teachers who complained we didn’t conform or comply. She didn’t question our choices and offered us freedom to learn what worked for us. She was an attentive, responsive parent but unconventional for the time.

And I love her for it.

So, when I lied, I was trying to tell her that SHE had made my childhood as good as it could be when others went out of their way to crush it.

Generational parenting stories

But emotionally this also weighed heavy as I realised my mum had potentially been carrying this guilt and shame for over fifty years.

So I started thinking about my own parenting story and quickly realised shame lived in my narrative too. Worry about doing it “right” from sleep patterns (what are those?!) to weaning, to hugging, to discipline. To my own behaviour. To meeting my own needs when I had to. To, well, everything.

I felt ashamed I hadn’t been as attentive to my kids when they were tiny. That I didn’t recognise and respond to their Autistic identity early enough. Shame from the responses of others when I wasn’t responding to meltdowns (and trying to stop meltdowns in the early days). For shouting when overwhelm hit. For crying in front of my youngest when my energy crashed to its lowest point and I could mask no more. For wishing at times that they weren’t mine.

I felt I had let down my eldest the most, by not challenging school enough. By not looking into alternative provisions and support. By not challenging a lot of agencies actually who repeatedly asked what I was doing (implying I wasn’t doing anything) rather than recognising what was being achieved. I recognised the same patterns between me and my mum. We both worked with children. We both worked with a focus on disability. Yet we didn’t feel enough for our own families. The shame spiral crossed the generation, becoming embedded in our individual stories.

And even though I have travelled so far in recognising and understanding my own needs as an Autistic individual, the internalised ableism kept shouting I was a “failed parent”. I talked more with my middle and youngest children as they grew up. I shared my parenting regrets with my eldest. I no longer blame myself for their autism diagnoses (we are an Autistically proud family). I can see the merit of my parenting approaches that, mainly by accident, enabled these fantastic individuals to develop into caring, creative, insightful young adults.

And they tell me this. They are honest (I have definitely made mistakes, and continue to do so) but we have great connections and communication to work through these without perpetuating shame and blame.

Infused shame and dominant stories

So, why is it so hard to shake, this shame feeling? I see and hear it from other Autistic parents. Parents who have grown up with an Autistic identity. Parents who are actively researching and educating themselves and others. It's still there like a fungus, finding the detritus to cling to and grow despite our best efforts.

My reflections, and observations of others’ stories are that a key factor is the responses and expectations of those around us. Those who are important to us and those who have positions of authority. When the dominant discourse is telling you that you are wrong, what are you to believe? When being used to being the outlier, the exception, the perceived incompetent, it's all too easy to revert to their stories of what parenting (and being human) is. Eventually, you won't challenge as you are seen as the "problem". The risk is too great. And too real.

Except, there is no such thing as the “right” way to parent. All parenting theory is based on assumptions. On perceptions based on the context of the time, culture, and the positions of the theorist. That is, after all, what theory is! It's why the application of theory shifts and changes. Attachment theory is a good example of this. Early developments of this theory were shunned for being too “behaviourist”. Later critiques suggested its bias towards White westernised cultural norms. Early experiments and approaches were harmful, ethically dubious, and with a gender bias.

And yet, we continue to use many concepts that have developed from attachment theory in both parenting and social work. We talk about responsive parenting, creating safety and stability as well as consistency to develop secure parent-child relationships. These are concepts used in both Autistic and other parenting contexts. But how they are evidenced is different. For discussion around Autistic parenting see my blog posts Parenting through an autism lens and A Fusion of Feelings

And that, I argue is where misconceptions and shame come into play. If you don’t show how you are creating fantastic safe relationships with your child, in the way other people want you to, you are perceived as 'wrong'. And the message is so hard in its delivery, it's difficult to ignore. The “good enough parent” seems so elusive for a lot of Autistic parents. But our “good enough” isn’t valued and visible to those who have the power to make a difference in our lives for the better.

Family members who dismiss our tried and tested routines. Professionals who minimise the importance of different ways of communicating and sharing affection. Reverting to the tried and tested “evidence-based” approaches in both family and agency contexts does not always translate. And we can't achieve them, even if we try. Cue shame.

Social work shame

As a social worker, shame isn’t far away either. Believe it or not, most social workers care about the families they work with. What they (we) can't always recognise is when our own biases are getting in the way. We are ashamed we can't affect change. We are not doing our job. Sometimes lack of resources means we can't offer what we want to families and we feel we are letting them down (we are).

Sometimes we are reverting to a style of practice we know is ineffective and I know I have this shame at some points in my practice history. I know I have learned from this however it still hangs heavy in my memory. I carry it with me now.

Current political climates offer no respite in this respect. Resources get smaller, referrals get higher. Emotional detachment is an inevitable defense against this shame leading to oppressive practice.

Reclaiming the narrative - and repositioning the narrator

But the beauty of stories is that the storyteller can change them. Parents, whilst some things may not be working as you hoped, there are always strengths even if they are hidden in plain sight. How do you find and celebrate these? From other Autistic parents! Peer support is a powerful thing. What we may not see in the self-worth mirror, others will. Or other Autistic parents can share experiences that may offer an alternative way of thinking or doing for you, that a non-Autistic parent or professional may not think about. Perfection doesn't exist and everyone needs learning and support at different times of their parenting continuum, I guarantee you. There is no shame in that.

And social workers, you are part of re-telling the story. Hear, see, feel what you are being told. Reposition the narrator as the facilitator of knowledge you need to learn. Don’t compare with stories you have heard before, be that previous assessments, parenting programme assumptions, or white-washed theories.

Don’t try and fit into your own experiences be that your parenting expectations, or when working with other families. There may be some similarities but don’t privilege what you want to see over what you have chosen not to. Equally listen to the challenges, and barriers and consider your own part in this. If you have taken time and curiosity to learn from Autistic culture and that particular family culture, even if the outcomes may not favour the parent for the safety of the child, your shame will not be that you didn’t seek to understand and try to work with that parent.

Ask questions, share your thoughts, be honest in any uncertainty, and enable time for a parent to share in a way that meets their communicative needs. Tell the parent what you see that is positive and why. Before you are certain an aspect of parenting isn’t being met ask yourself – how do I fully know?

Share the re-telling of these stories with other professionals, agencies even other family members who may not be supportive but could be. Shift the narrative of shame to a narrative of acclaim. Let the Autistic parent’s voice soar and feel validated.

Help parents break the shame spiral. Help children see their parents flourish and learn there is nothing shameful about being an Autistic parent.

Please don’t let an Autistic parent sit with shame for 50 years. No one deserves that.

This message is dedicated to my mum.