Book review: Autism mothers speak out

Apologies, blog followers, I’ve lost my blogging mojo, but it doesn’t mean I’m not writing!

Here is an extract and link for you to read my first journal piece, a book review published in Disability and Society.

Autism Mothers Speak Out is an anthology of accounts by mothers of autistic children, now adults, born between the mid 1960s and late 1990s across the world. The purpose of the book is both to challenge the ‘refrigerator mother’ theory of autism, the notion that autism can be caused by bad mothering, and to showcase the advocacy work of mothers. The introduction, written by one of the co-editors, Maggi Golding, an educational consultant in South Africa, outlines changes in perceptions of autism since her first encounter with an autistic child in 1957. As a former teacher in a psychiatric children’s hospital from the late 1950s, she describes an incongruence between the dominant psychoanalytic theories and treatments based on ‘mother blame’, and the committed and devoted mothers she encountered. Fellow co-editor, Jill Stacey, President of the World Autism Organisation and one of the founders of Autism South Africa, contributes a chapter to this book…

To read the rest of this review please click here:

Open access link to book review of ‘Autism mothers speak out’

Open letter to playwright Mike Heath and Kibo Productions

Please follow the link below, read, share and sign up.

“Many people will be surprised to learn that autistic mothers exist at all. But here we are: loving, affectionate, deeply engaged and often working and/or serving our communities alongside our parenting responsibilities. It is probably too ordinary to merit a dramatic presentation, and in fact too similar to the experiences of neurotypical mothers to merit any attention at all. That is not to deny that autistic mothers face multiple challenges in their everyday lives, but those stories are theirs to tell. Autism is a very broad spectrum indeed (or even a constellation), representing millions of unique experiences. The blanket assumption that we struggle to love is a lazy, outdated cliché.”

Read the rest: autisticmotherhood.co.uk/

There is also an autistic review of the play here: The Big Things (a play about female autism… or is it?)

And this wonderful piece of writing by Sonia Boué: #AutisticMotherhood misrepresented

From ‘autism mom’ to autistic mother

image shows a wooden bridge across a stream in a woodland setting, with ‘from ‘autism mom’ to autistic mother’ in white text

‘Autism mom’ is a term often used by, and to describe, non-autistic mothers of autistic children. It’s a sort of identity, signifying her interest in and connection to autism. ‘Autism moms’ wear jigsaw piece embellished slogans, share memes about their ‘special children’, light it up blue and support Autism Speaks. They want to solve the puzzle of autism and unlock their children from their autistic prisons.

‘Autism moms’ are often passionate about getting the best treatments for their autistic children and keen to measure and compare progress. They love their autistic children and want to cure them of their autism. They spend their savings and pension pots on expensive treatments, some fairly benign, others fairly harmful.

‘Autism moms’ talk of their despair, their fear and the horrors of their daily lives. They understand when fellow ‘autism moms’ murder their own autistic children, because they understand the despair and the the nightmare of autism parenting. They raise funds for research and rejoice at scientific discoveries which suggest a cause for autism, hopeful that cause might lead to cure and prevention.

‘Autism moms’ are often criticised by adult autistic activists for not properly understanding autism. When it is suggested that the path they tread is misguided or dangerous, ‘autism mom’ claims that her child is more severe or more different to the autistic adult, that she knows her child best and has their child’s best interests at heart.

‘Autism moms’ are also criticised for wanting to cure autism, for striving to take away an essential part of their children’s personhood. Autistic activists argue that autism is a neurological variant, not a disease or affliction, and that acceptance and accommodations are what’s needed, not treatments and cures. ‘Autism moms’ are derided for discussing the day to day challenges of parenting their autistic children and told to listen to and be guided by autistic adults.

*

My introduction to autism began as a (seemingly) non-autistic parent to an autistic child. I was never a full-on ‘autism mom’ as described by the gratuitous stereotype above, but I can relate to the sentiment. I shared the worst and the best of my son’s behaviour and development on social media (albeit anonymously). I rejoiced when he behaved more like, and showed signs of development in line with, his non-autistic peers. I read and read and read to find ways to help him develop his emotional and social skills. I tried to help him ‘fit in’ with his non-autistic peers and shuddered with embarrassment when he showed his autism in public.

I looked for the magic bullet to help him overcome the problems of his autism and be more like his typically developing peers. I wanted his life to be easier and happier.

Parents (almost always) want the best for their children, we certainly don’t want our children to struggle. From the moment they’re born our children are measured, weighed, charted and checked, their progress against developmental norms compared and recorded. As parents we watch for signs of the next steps, celebrating when they make good progress or are ahead of the curve, worrying when we see delays. We see our children among their peers and cannot help but compare. Our children will grow up into a world made for norms. We want to smooth the path. We worry more. We do more. The search for the elusive key becomes all consuming.

I understand why ‘autism moms’ wear themselves out trying to ‘fix’ their autistic children. I understand why they want to identify the causes of autism and prevent more hardships and heartbreak. Parenting an autistic child in a world built upon and for norms is not easy. Lack of understanding, poor educational options, constant battles for provision and support, balancing needs and resources within the family, it is hard and it often feels relentless.

*

As I meander through this new world, with my newfound autistic identity, I struggle at times to consolidate the different perspectives. On the one hand, I am a parent to a child who has had way more struggles than a child should, and I want to do everything in my power to ameliorate those struggles, whilst on the other hand I want to celebrate his (and my) differences, and glory in the wonder of our neurodivergence.

I listen when autistic adults offer advice to parents of autistic children. I read carefully when autistic adults write articles criticising ‘autism moms’ and their choices. I constantly compare what’s being discussed to my own parenting, wondering if I measure up, am I doing my son a disservice, am I good enough? After a lifetime of never fitting in, I can’t help but wonder where I fit. I still feel as if I have a foot in the warm shallow end of both ‘sides’.

The reality is that it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.

*

I started writing this post nearly 2 years ago and had planned it (rather grandiosely perhaps) as a way to try and bridge the gap between what sometimes feels like the warring factions of ‘autism moms’ and autistic activists. I really struggle when I read accounts by autistic adults who are not parents themselves (for example Temple Grandin’s ‘The Loving Push’ book) giving parenting advice to parents of autistic children. I’m not sure non-parents can ever really understand being a parent any more than non-autistics can ever really understand being autistic.

I also struggle when non-autistic parents of autistic children are told they just need to understand and listen to their child better, as if that’s the magic answer. My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children. I didn’t have all the skills I needed to parent my own child so how can I know what’s best for another child, who is not part of my family?

*

I know I am not alone as a parent trying to balance preparing my child for a life in a neurotypical-centric world whilst trying to preserve his right to be his own autonomous autistic self. It can be a tricky balance, and I often worry I’m missing something important. I do not agree with many ‘autism moms’ who see ‘normal’ and non-autistic as the ideal to aim and fight for. I do not see compliance with neurotypical expectations as desirable, in fact I see it as antithetical to self-advocacy.

If I can send one message to ‘autism mom’ it’s to encourage and prioritise your child’s autonomy over and above everything else, for this is what will help keep them safe in the future.

For more on autonomy, please read Jamie Knight’s article here:

Spoons and other metaphors: how I use my social care budget

The irony of parent-blaming

image shows a head and shoulders from behind, of a person wearing a hooded raincoat and large floppy knitted hat, with the text ‘The irony of parent-blaming’.

There is near universal agreement among autism academics that inadequate parenting does not cause autism, yet the legacy of psychoanalytic, parent-blaming theories of autism remains. The enormous popularity of theories like Kanner’s ‘refrigerator mothers’ and Bettelheim’s frankly bizarre Freudian analyses of motherhood, contributed to this longevity. Even now, with all we know, so often when faced with autistic behaviours, GPs, clinicians, teachers, friends and family seem to find reasons for visible behaviours that place the blame firmly on the parents.

The irony of all this parent-blaming is that there’s no consistency. From my own experience and having spent years interacting with 100s of parents online and in ‘real-life’, it’s clear that, for some people, all that matters is finding the ‘thing’ that the parents are doing ‘wrong’, even when the child is already diagnosed autistic.

My son is an only child so that has been suggested as a reason; but interestingly, my friend whose autistic son is one of 5 has been told it’s because he’s one of many.

I have heard mums told it is because they work, implying the child’s needs are neglected; and also because they don’t work and spend too much time with their child, implying indulgence.

Some are told they are too strict; and others too lax.

Perhaps it’s because both parents work; or perhaps it’s because neither parent works.

It could be that the parents expectations are too high; or too low, who knows?

Maybe it’s because the child doesn’t attend any extra-curricular activities; or maybe they spend too much time doing an activity they love.

It might even be because they never went to nursery; or was it because they were in childcare from an early age?

It’s probably because they’re the youngest, or the oldest, or in the middle.

For every single reason for blame given to a parent, I can bet that another parent has been given the opposite reason for blame.

None of these things cause autism.

But these messages do affect how people view autistic people, both children and adults. These messages suggest that the autism isn’t inherent, that it’s not an integral part of our being, instead suggesting that it’s damage inflicted upon us.

And that’s just nonsense.

Autistic mothering

Reflections on parenting an autistic child

This is the third and final part of my write up of the talk I gave at an NAS conference. This was the part of the presentation where I talked a little about day to day parenting as an autistic mother of an autistic child, the strengths and the challenges. When I agreed to do the talk I asked what was wanted. My experience, which may be shared by other autistic mothers, is my experience. For it to work for me I had to use my own life as the main source. The NAS asked me to consider issues like difficulties with professionals and FD/MBP (which I wrote about in my last post) or why a mother might not understand that their child is behaving inappropriately in class. Yet, in my experience, one of the biggest problems has been me identifying problems, strategies and solutions which the teachers don’t understand!

Too like us?

Parents, usually mothers, sometimes recognise developmental delays and anomalies in their child which prompts a visit to the doctor or health visitor asking for reassurance or help. The anomalies may be apparent in comparison to siblings, cousins, friends’ children or peers at playgroups and childcare settings. My own limited social contact and my son’s aversion to group play meant I missed out on this opportunity to compare and rank his development. Although I had spotted signs of difference from very early on, it was subtle, and he wasn’t that different to his parents! It was easy to set aside my concerns that there was nothing ‘more’ that needed exploring. In time his differences and difficulties became more pronounced, his behaviour began to deteriorate, and he was assessed and diagnosed. As my son was being assessed there were two examples of fairly explicit missing of signs on my part, regarding sensory problems and joint hypermobility. Both are commonly associated with autism.

When my son was three and in nursery, he was assessed and recommendations were made by a local authority early years SEN advisor. She was quite brilliant and wrote a thorough report with lots of practical ideas for nursery to support his development. She discussed sensory difficulties and recommended the book ‘The Out-of-Sync Child’ by Carol Stock Kranowitz. I duly bought the book, read it, and failed to recognise any of the problems described. I gave the book to Oxfam. A couple of years later, as part of my son’s autism assessment, we saw an Occupational Therapist. In a very long assessment session, she explained sensory integration and processing and, suddenly, I realised why I was not seeing my son’s sensory foibles – they were the same as mine!

The OT also noticed that my son had very flexible joints and referred him on to a physiotherapist for assessment and advice. He had been alluding to shin pain but he had, and still has, a tendency to catastrophise. The physiotherapy assessment included taking a family history. As she started talking about joint hypermobility syndrome (JHS), I realised that the bendiness which is normal in my family is not normal at all. I had thought that my partner had abnormally stiff joints. It transpired that he has normal joints. Towards the end of primary school and early secondary, I had undergone a range of tests and assessments for debilitating joint pain. It was never properly explained, but the worst passed when my periods started and I learned to live with frequent sprains, clumsiness and occasional pain, laughing it off as another example of my crapness. With my son diagnosed with JHS and my newfound explanation for my joint problems, it was clear that using me as a model of ‘normal’ was a mistake.

In a way, I was lucky, had my son not presented with some fairly challenging behaviours, these issues would have gone unrecognised and we would have missed opportunities to improve the quality of his life. For some autistic mothers, particularly where their children are good at masking and are not exhibiting extreme behavioural problems, differences may go missed until a child reaches crisis.

Just like me

I do worry that, because we are very similar, my son’s opportunities and development are limited. I am fairly lax about conformity and place less emphasis on superficial ‘social skills’ than a more typical parent might. But whilst it’s hard to teach your child what you yourself find hard, it can also mean being more conscious of what’s really necessary. I’ve chosen to focus on building confidence and a sense of humour in my son, rather than more explicit social skills training. For me, ‘social skills training’ led by NT adults is an ineffective way to encourage positive social interaction for autistic children. It is often grounded in encouraging autistic children to fit in and be more like their peers (more normal?), rather than building on strengths and interests. I wonder too whether social expectations should be reduced, whether sometimes skills are pushed before a child is developmentally and cognitively ready?

I can’t help but feel there are advantages to parenting from a position of similarity. When a child cannot verbalise their needs, and even highly articulate autistic children can struggle with this, having a parent who is ‘in tune’ must make a difference. Thinking about my son’s sensory problems, it would be easy to dismiss them as ‘silly’ and ‘fussing’ if you have never experienced it yourself. It’s not about having the exact same problems either, it’s more about respecting your child when they communicate a problem. It’s not uncommon for autistic or neurodiverse parents to find parenting their autistic children easier than their NT children.

The social world of our children

Navigating the social world of our children is an essential part of parenting for any parent. When you are an autistic mother of an autistic child it can be a highly stressful experience. Baby and toddler groups are a significant source of support and shared experience for many mothers in the early years. My experience of them pre-dates my son’s (and my own) assessment and diagnosis. My son was bemused and withdrawn whilst I struggled to engage and interact with other mums. We both found them impossibly hard and I quickly realised they weren’t for us. Thankfully they are optional!

School gate social interaction is harder to avoid. In the early school years ‘playdates’ and social events are arranged through (mostly) mums, who forge new social relationships through their children’s friendships. The combination of a child showing increasingly challenging behaviours and a mother who can appear aloof and unfriendly can be extremely isolating for both parent and child. It is an uncomfortable position to be in. It is particularly difficult if an autistic child is not yet diagnosed. Classmates notice and draw attention to your child, who starts to get a reputation for being naughty. Other parents avoid you, assuming your parenting is at fault. They don’t want their child to play with your child. Even once the worst behaviours recede it is hard to come back from. I never fully recovered from playground pariah status, though I did manage to make a couple of friends who saw past my son’s and my own differences and became great supporters of my son among the other parents. It is considerably easier at secondary school where there is no school gate culture and the children mediate their own friendships.

Finding a balance

Balancing needs within an autistic family (my partner/son’s dad is almost certainly autistic too) is not always easy or indeed possible. Different sensory tolerances can create conflict and increase stress. A child’s need for physical contact might clash with a parent’s dislike of touch. Of the mothers I have discussed this with it is touch and proximity which seem to present the biggest challenges. It’s not that we don’t want to hug and snuggle with our children, we do, but sometimes it is really uncomfortable. Noise, smell, and lighting levels can all create problems. Eating together, often held up as a cornerstone of family life, becomes impossible when your child is repulsed by your culinary offerings, or when you can’t tolerate the sound of another person eating. Autistic families have to work differently to the idealised, often romanticised, cultural norms of family.

Parenting a child with any disability or additional needs invariably increases stress, anxiety and exhaustion. Autistic mothers are expected to not only maintain their mask of normality, but their mask of ‘good parenting’ too. I have nodded along when given advice, knowing that standard strategies for a typical child won’t work, refraining from explaining what I really do. Our family works best when we find collaborative, flexible and creative approaches to problems. To an outsider it can look like weak, ineffectual parenting, but we (mostly) know what we are doing and have a target in sight! We might struggle to parent in a typical way, but it does not mean that we don’t parent well.

Parenting courses

Most of us have been offered and attended ‘parenting courses’. This might be standard or more specialised courses. I have heard of parents who are concerned their child might be autistic, or have other developmental delays, being sent on standard parenting courses before being referred for assessment. Sometimes it feels that this is a way to blame parenting for a child’s difficulties, and sometimes it seems almost strategic, as a way to delay assessment. I worry that expecting parents of yet-to-be-diagnosed-autistic children to work through strategies and techniques aimed at typically developing children causes unnecessary delays and wastes time when more appropriate skills could be developed. It is also concerning that, even when a parent has solid evidence that there is something different about their child which needs exploring, the first line of thought is that it must be parenting at fault.

More specialist parenting courses, like the NAS Early Bird courses, are offered once a child has a diagnosis. Whilst I enjoyed the Early Bird Plus course I attended, there were issues. By the time many parents get confirmation that their child is officially autistic, they’ve read, researched and trialled a whole range of approaches and techniques. For me, there was little new or enlightening learning and I don’t think this is uncommon. Being offered the course at an early point in the assessment process might be helpful, especially as it can take years to get from referral to diagnosis. A bigger concern for me on a personal level was how the course ‘othered’ my child. There was no recognition at all that parents might be autistic too. We were treated as if our children were alien to us. I experienced similar when I later attended a course on sensory processing offered by our local OT team, there was no recognition that parents might have a similar profile. Professionals running these courses need to up their game and recognise the (neuro)diversity of parents, not just children. It can feel like they have forgotten that adults, including women, can be autistic too.
To end this trilogy of posts, and I am extremely grateful you’ve stayed with me, I want to say that I think I do parent my son better as a result of him being like me. Judging by how hard it has been to encourage understanding by other adults in his life, I think it helps that I ‘get him’. My own autism means that I worry I am not the best advocate for him, as a result of my executive functioning and communication problems. I fret about whether I provide enough social opportunities or that I am too soft. But, over all, I think we are doing ok. I am ‘good enough’.

Could do better

A message to professionals working with autistic mothers of autistic children

This is the second part of my writing up of a talk I gave at an NAS conference. It is in some way the most important part of these three linked blog posts. This was and is my platform to tell professionals, both those working with us and those working with our children, what we need, what we struggle with and where you are getting it wrong and could do better. This is not an exhaustive piece, there is much more to be said, but it is a place to start and perhaps a way to encourage dialogue.

This post is primarily written for professionals working with autistic children, though much of the advice applies to adult services too. My focus is autistic mothers, though much will also apply to autistic fathers, and I am adopting a female default.

Remember, as was highlighted in my last post, there is a reasonable chance that most of the autistic mothers you encounter will not be diagnosed, and may indeed be oblivious to their own social and communication difficulties. By making your systems and processes more adapted to the needs of autistic mothers, you will be supporting not only undiagnosed mothers (and fathers) but other adults with additional needs.

As a parent of an autistic child there is no choice but to submit to a whole range of professional involvement. Even without our own autism it is hard. There is a lot of learning, planning and organisation required on a daily basis. We enter a world of acronyms: SEN, SENCO, ASD, SPD, JHS, IEP, EHCP, OT, PT, SALT. We open our lives and our families to scrutiny. We are judged.

And here lies the problem, our interactions with professionals are often judged. We know that how we present ourselves has the potential to change how you assess and what recommendations you make. We know you often think it’s us causing the problems. But are you judging us against the right model? Are you failing to spot that what appears problematic might not be at all? Could you take a moment to consider whether that mother (and, lets be honest, it is nearly always mothers you encounter) might be autistic?

Communication and asking for help

It should not be surprising that autistic mothers struggle to communicate. Autism is fundamentally a social and communication disorder. It is, however, surprising how little thought seems to go into making services and provision supportive of autistic mothers. It is not enough to make a provision or service autism-friendly if the autistic people in most need are unable to access it because of poorly designed systems which are anything but autism-friendly.

Having spent a lifetime maintaining a mask of proficiency, asking for help is tricky. We have to consider who to ask, how to ask, when and where? We fret over being laughed at or dismissed, concerned that expressing a need for help might signify our failure or incompetence. We struggle to find the words. Even when asked directly we may say ‘It’s ok, I’m fine’, when really we want to say ‘It’s not fine, I’m really struggling, but I can’t find the words and I need to get out of here’. Many professionals seem to leave the asking if there’s anything else they can help with until the end of a session. By this time we have usually had enough of the too small or too big room, the bright lights buzzing, the irritating noises beyond the door, the talking. All we are thinking is ‘Get me out of here’.

Phones, phones, phones

Using the phone appears to be a challenge for many autistic people. All of the non-verbal cues which (we have tried to learn) aid communication are stripped away. It’s just a voice. As we use phones less and less in our social lives I think it becomes even harder to communicate in this way. Every time I have discussed phones with other autistic women, we all describe high levels of anxiety around making and receiving phone calls. Screening calls seems to be common, we may silence our phones, use caller display and rely on our answer-phones. If we are expecting an important call, we will wait on tenterhooks, unable to do anything else until that phone call is complete.

Making phone calls is equally problematic. We plan what we need to say and adopt our ‘making a phone call’ persona, reminding ourselves of the conventions of making a phone call. We worry that the call will not be answered by the person we want, and have planned, to speak to. We dread having to explain the purpose of our call to a receptionist or some random person answering the phone. And what if it is an answer-phone? Before we make that call we prepare and rehearse numerous scripts for every conceivable possibility. Unfortunately, when an actual human answers, we are likely to forget the scripts and get in a muddle which sets the tone for the call…

Email is an easy solution

Considering that autism professionals must know how we struggle with verbal communications, it is troubling how few of you willingly offer alternatives. My life, and my ability to advocate for my son, has been immeasurably improved through the use of email. If you do one thing to improve your service, please provide your email address and show willing to communicate in this format. I can think of no reason to withhold email addresses, and am not sure what’s stopping you.

‘Call if you have a problem’

How many times have I heard this. It seems so simple. A professional who wants to help if there is a problem. But it isn’t that simple at all. As well as the general phone problems outlined above, how do we know what sort of problem to call with? Is this problem too minor or beyond the reach of your remit? If I make contact will you still know who we are? How long does this loose ‘call if…’ statement apply. I haven’t seen my son’s diagnosing paediatrician since 2010, she said to call if I had a problem, can I still call her? Probably best not! Explicit, clear, formal guidance for ‘what do do if…’ can be far more helpful in reality than kindly words.

The ‘Basil Fawlty’ effect

The more terrified of a situation I am, the more calm and confident I can look. The more arrogant. The more like a twat.

Lloyd-Williams, R. (2016). Burning Paper Faces. Unpublished.

A final word on communication problems. If you notice us getting more intense and agitated as we struggle to communicate, reminiscent of Basil Fawlty’s hopeless and often extremely uncomfortable interactions with his guests and staff, please spare a thought for our feelings. Be kind, give us space, perhaps postpone to enable us to find a more effective way to communicate.

Executive functioning

Problems with processing, planning and organisation are often overlooked when discussing autism, but seem common among the women I engage with online. In my last post I discussed how I juggled home, work, family and studying, but within and beyond each of those spheres there are a multitude of factors to manage. And because we have to work that much harder at the basics of life, and use a large part of our intellectual ability to do what comes easily and instinctively to neurotypical people, we sometimes find we have little left in reserve for day to day administration. This can be a problem.

One of my biggest challenges is responding to requests on time. I am an inveterate postponer. I rarely miss appointments as they are recorded on the calendar (and my partner reminds me). My biggest problem is ‘the letter asking me to phone’. As discussed above, phones are my/our nemesis. The best way to discharge me or my son from a service is to ask me to phone you to prevent said discharge. ‘The letter asking me to phone’ appears to be a way to target those in need of most help, and, I expect it is a useful way to reduce caseloads… Surely, any parent who is genuinely struggling and in need of continuing services will phone? Perhaps not. When I receive these letters I read them, think ‘I will do that tomorrow, and place them on ‘the pile of things which must be dealt with’. The next day, if something hasn’t been put on top of ‘the letter asking me to phone’, I might look, think ‘I must do that before the deadline’ and carry on with my day. The pile grows. Eventually the pile gets too messy and I have a sort through. At this point I find the ‘letter asking me to phone’ and realise it is too late.

My reason for telling you this is that the people who respond to these letters promptly may not be the people most in need of your service or provision. Many of them will be, but please spare a thought for those of us in need of what you provide, who should remain on your caseload, but who missed the deadline. I know that services are over-stretched and perhaps you don’t have time to chase up every letter sent, but you could consider alternative methods of communication. If only you had provided an email address…

Mother blaming

I am sure that everyone has heard of the ‘refrigerator mother’ theory of autism. The one where us cold, distant, emotionless mothers cause our children to retreat into their own worlds? Whilst there is no evidence to suggest that parenting causes autism, the ‘refrigerator mother’ legacy continues to impact on us today. Numerous mothers of autistic children are being sent on generic parenting courses and being subjected to intrusive, and often inappropriate, family therapy, and worse, because professionals are missing the obvious. That there is a reasonable probability that one or both parents of an autistic child are also on the autistic spectrum.

One of the first books I read after my son was diagnosed was Mike Stanton’s ‘Learning to Live with High Functioning Autism’. It is an excellent book to instil confidence in parents of newly diagnosed children. In it he shares a profile which many mothers of autistic children seeking diagnosis and ‘treatment’/provision might fit. I reproduce it, with his comments in brackets, here:

Are often upper class, well-educated persons (articulate, educated parents are often the best at obtaining services from a system that is not too user friendly).

Remain uncharacteristically calm in view of the victim’s perplexing medical symptoms (we all know that stress makes our children worse).

Welcome medical tests that are painful to the child (only if they are necessary).

Praise medical staff excessively (only the good ones that understand autism!).

Appear to be very knowledgeable about the victim’s illness (we have to be knowledgeable about our children as not too many other people are).

Have some medical education, either formal or through self-initiated study or experience (I have had to teach myself some basic medical stuff in order to evaluate conflicting theories and therapies for autism).

Might have a history of the same illness as the victim (there is a genetic element to autism).

Typically shelter victim from outside activities, such as school or play with other children (I have withdrawn my son from school to protect his mental health. Many parents become home educators because the schools cannot cope with their children).

Allow only selected persons close to their children (yes, the autism friendly ones).

Maintain a high degree of attentiveness to the victim (some people with autism benefit from 24-hour provision, seven days a week. Most of us are papering over the cracks in available provision).

Seem to find emotional satisfaction when the child is hospitalised, because of the staff’s praise of their apparent ability to be a superior caregiver (so, we respond well when professionals praise our parenting ability? There’s a novelty!).

Stanton, M. (2000). Learning to Live with High Functioning Autism: A Parent’s Guide for Professionals. London: Jessica Kingsley Publishers.

The use of the word victim provides us with a clue. This list is from an FBI profile of Munchausen’s Syndrome by Proxy offenders (MBP; now known clinically as Factitious Disorder imposed on another). Is it any wonder that we are eyed with suspicion? It is easy to see that when you take this profile and then factor in a mother who is autistic, particularly if she is not diagnosed, how communication and behaviours could be dramatically, and potentially catastrophically, misinterpreted. Being accused of exaggerating and falsifying reported behaviours is not that uncommon among parents of all additional needs. If you are an autistic mother, with communication difficulties, perhaps some odd mannerisms, struggling with eye contact (often mistakenly seen as a sign of dishonesty in neurotypical people) and maybe not very organised, the chance of you being blamed for your child’s problems are greater. It may be implied that a mother is presenting with a Factitious Disorder, faking her child’s symptoms to serve her own needs, to access services or for financial gain. In extreme cases, children have been removed from their families on this premise. A report produced by Autism Women Matter highlights the consequences for autistic children and their families when professionals fail to consider or recognise that mothers can be autistic too.

Final thoughts

Factitious Disorder (MBP) is an extreme example, but with the potential for devastating consequences. I would suggest that if you are a professional working with a family with an autistic child or children, and you have concerns that the mother is behaving oddly, don’t jump to a mother blaming conclusion, remind yourself that the ‘refrigerator mother’ theory has been de-bunked, take a moment to consider that she may be autistic too. Think about how you can improve communication, because, ultimately, all professional relationships are built on communication.

Remind yourself that autistic mothers are probably at their most vulnerable before they are diagnosed. Some mothers might be horrified at the thought that they are autistic, so careful thought will be needed to ensure understanding and meeting of needs whilst respecting her privacy. Autistic mothers are perhaps less likely to perform stereotypical gender roles which, sadly, still raises eyebrows and elicits judgements about our mothering. Without a diagnosis we are at risk of being misunderstood and misinterpreted, as well as misunderstanding and misinterpreting you. With or without a diagnosis we need you to believe, respect and support us. Most of us are doing the best we can.

Many thanks to Rhi for permission to quote from her, as yet, unpublished novel.

If you’d like to leave a comment or press a button and you can’t see how, try pressing the little circle below.