Opportunistic mothering

Improving social and communication skills through humour and novelty

Before having my son, I had always assumed I would fall into the ‘benign neglect’ school of parenting. I would be laid back, give as much freedom as possible, and provide opportunities for adventure, risk-taking and learning through doing. I would be able to continue with my own hobbies and interests while my child or children frolicked and played with minimal input or effort from me. Having a child with no sense of danger, limited social and communication skills and little interest in anything outside his very limited special interests, who seemed to need a lot of teaching to learn everyday skills, seemed to put a spanner in the works.

Once a child has a diagnosis of autism there is a sense that we must encourage and push development, to somehow shrink the gap between our autistic children and their typically developing peers. I would imagine most of us spend the period after diagnosis searching for the most effective methods and techniques to support our children’s development. Expensive and intensive programmes and therapies are out of reach for most parents, and may not fit with our own beliefs and lifestyles. Most of us muddle along with a combination of health and educational provision, learning from the professionals we encounter, books, internet resources and research, from other parents (in real life and online), and a great big dose of trial and error.

I mentioned in my last post how I use humour as a parenting tool. In this post I want to share some of the spontaneous moments, opportunities for learning and less conventional means of supporting development. These examples weren’t planned, they were mostly just little off the cuff moments when I was able to take advantage of an opportunity to impact my son’s thinking. This post might also give a flavour to how I parent on a day to day basis.

The cat

Despite my son having excellent speech and a huge vocabulary, he has always struggled with non-verbal communication. I had tried the traditional ways of teaching him to interpret tone and intent from posture and facial expressions, but he just couldn’t get it. I had tried responding to him in non-verbal ways, which just made him angry. I had tried introducing books and resources to explain, but he refused to look. As far as he was concerned, words were enough, the rest was superfluous. What could he possibly learn from body language and facial expressions? Why was it important? Did it even exist?

Then we adopted our current cat. We’d had a cat from before my son was born but she was aloof and solitary. NewCat is different. He’s a tolerant, people-pleasing, attention-seeking, huge lump of a cat. His life before he came to us meant he had developed a sophisticated set of poses and signals to manipulate humans into giving him attention. As my son began to research cat psychology, and learned to interpret posture and behaviour, he learned the value of non-verbal communication. It hadn’t been enough to teach it as an abstract concept. My son needed to experience communicating without words and see for himself that it had value.

Comedy

For as long as I can remember my son has been fascinated by language. His early echolalia has developed into a talent for mimicry, of both style and genre. He has at various times played around with language, dropping consonants for a while, making up words and being ‘creative’ with sentence structure. He has always had a clever sense of humour and a liking for the absurd, so comedy programmes have been a source of entertainment we could share as a family. They have also provided fruitful learning opportunities and have been a wonderful tool to support his social development. Here are some of his favourites and what he’s gained from them:

(You will notice that we are not strict adherents to age ratings, however, some episodes of some series are more suitable than others, and we use our own judgement.)

Would I Lie to You – the BBC panel show where contestants read statements about themselves, which might be true or false, and attempt to convince their opponents they are telling the truth. WILTY provides a perfect opportunity to think and talk about plausibility, honesty and lies. Body language, tone of voice and content can be analysed. As a family we can model turn taking and forming an argument as we come to a decision.

Fawlty Towers/Father Ted/Blackadder – Three classic comedy programmes providing a rich source of material for discussing communication, misinterpretation and relationships between characters. The exaggerated social reality of these programmes can be used to great effect when exploring social interaction and social relationships.

The Mighty Boosh – Absurd anarchic comedy which values difference and shows unusual friendships, explores fitting in and, mostly, provides a wealth of material to imitate and amuse his peers! It can be crass and uncomfortable viewing at times as it skates close to the edge of ‘decency’, but we can use this to consider the lines between acceptable and unacceptable humour and how we define offensive.

The Day Today/Brass Eye – Chris Morris’s sometimes controversial comedy series, which satirise and parody mainstream media, have provided plenty of material for discussion. Like ‘The Mighty Boosh’, they challenge ideas about what’s appropriate. They also encourage discussion about issues of interpretation, representation and truth, particularly helpful with an autistic child struggling to understand sarcasm and irony in daily life.

Stewart Lee – It has been hard to encourage my son to think more broadly about what’s going on in the wider world. Whilst the Chris Morris series provided a framework, our recent introduction to Stewart Lee’s more contemporary and political humour has provided much food for thought. It can be a little disconcerting when my son rants about his day in the style of Stewart Lee!

Comedy works for us because it’s a way to explore communication and behaviour in a way that doesn’t feel like ‘work’ or ‘therapy’ or an ‘intervention’. It’s also proved to be a really effective way to build social and cultural capital.

Marvin

For as long as I can remember my son has struggled with optimism. He is often pessimistic, nihilistic and has a somewhat glass-half-empty approach to life. His problems with recognising and regulating his emotions have meant a tendency to only see, feel and recognise extremes. Life is either super-fantastic-best-day-ever or terrible-dreadful-worst-day-ever. Since he was about 5 or 6 years old, the worst-day-ever days have occasionally resulted in him expressing a wish to die. As a parent this is a heartbreaking thing to hear from your child and really quite alarming. Maybe being autistic gave me an emotional advantage here, because I approached his suicidal expressions fairly rationally and logically. At the time I knew he wasn’t capable of carrying this out and the moments were fleeting. There were no signs of sadness or depression, but there were signs of high anxiety and the obvious problems around emotions. I concluded that the talks of death were his way to say he was very anxious.

I have used a variety of methods to reduce anxiety and we have made extraordinary progress, but he would still utter these negative and extreme thoughts and I continued to think how best to address it. After mentioning it to an OT, a referral to CAMHS was suggested, but I knew this wasn’t a mental health problem, it was an autistic problem. With this issue he was struggling with his emotional literacy, not his mental health, and, like many parents of autistic children, I was wary of intervention by staff with little understanding of autism. My breakthrough came when my son read Douglas Adams’ ‘Hitchhiker’s Guide to the Galaxy’ series of novels. Marvin the Paranoid Android’s glum expressions of woe were a perfect fictional representation of my son’s negative thoughts. By drawing this parallel, we were able to talk about negativity and catastrophising in new ways. Now we can describe his worst-day-ever utterances as ‘doing a Marvin’ we’ve found a humorous way to interpret and help manage these extreme thoughts.

I would not suggest this sort of lighthearted approach to anyone parenting a child who is genuinely suicidal. I knew my son wasn’t because we would talk more objectively about it when his anxiety was low. He is also completely and utterly pain averse, and highly sensitive, so we could make light of the very idea of harming himself. What this approach did was provide a means to show how disproportionate his responses were, and that here is a limit to how many worst-day-ever days you can have.

Gaming

Minecraft must be the most popular autistic child pastime ever. My son was a reluctant Minecrafter to start, put off by its popularity and his determination not to be like other children. Once he decided he would try it he was quickly hooked and there’s no doubt it helped him find common ground among his peers. More recently, playing Fallout 4 has enabled him to discuss game content, strategies and progress with his friends at school.

An unexpected bonus of this particular game has been around manners and politeness. My son has always maintained that he ‘cannot see the point of manners’, and frequently refused to adopt such social conventions. It has been exasperating on many occasions. Part of the gameplay of Fallout 4 is increasing your ‘perks’, a series of character traits which aid your progress through the game. One morning, not very long ago, my son was describing the ‘charisma perk’, telling me how this helped his character get what he wanted, and that upping his charisma made him more appealing to other characters. I pointed out that this was a bit like using manners in real life, by levelling up his manners he might discover that people are more helpful, more kind and maybe he’d be more likely to get what he wants! I’ve used this analogy since and it’s proved more meaningful than years of trying to teach manners.

Swearing

When my son was given a detention for swearing I was just a little bit pleased. He had been wound up by another pupil and had sworn at them, which was witnessed by a teacher, resulting in a detention. Throughout primary school he had struggled with his temper and been aggressive to other children numerous times. He knew it was against the rules, he didn’t want to lash out, but he had no control. My focus for years has been on finding ways to reduce his instinctive fight response to even the mildest stimulus (I hope to talk more about this behaviour in later posts).

Children swearing is often considered a sign of poor parenting, indicating a lack of boundaries and inappropriate modelling. Both my partner and I swear though we tried hard not to when we became parents. As it turned out my son learned most of his swear words (including those usually considered most offensive) from his peers. Phew. I didn’t realise at the time, but as his repertoire of swear words increased, his violent behaviours decreased. It became apparent that swearing provided a verbal means to express anger and frustration . It may not be what most parents aspire to, but the move from a physical expression of anger to a verbal expression feels like progress to me.

I don’t think that any of this is revolutionary or original. I am drawing attention to it because I think many of us parents feel powerless, particularly in the earlier years. We don’t feel skilled to do what we think our children need. We assume we will get professional help for our children. We expect the professionals to know more than we do! But I wonder if we might make better progress (certainly in some areas of development) with a more informal and spontaneous approach. Just because a child has a disability doesn’t mean parenting has to be serious. It is possible, possibly preferable, to address sometimes very serious problems with humour.

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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.

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Hiding in plain sight

Getting a diagnosis as an adult woman

My route to diagnosis reflects that of many women like me. In seeking knowledge and understanding of our children’s needs we start to make links to our own lived experience. We come to realise that we are more like our children than we imagined. As we submerge ourselves in assessment and scrutiny, the professionals we encounter are seeking evidence of difference from the norm. It is not always easy to recognise and highlight your child’s foibles, challenges and developmental delays when they mirror your own.

This is the first of three posts which build on a talk I gave in early March at the National Autistic Society’s Professional Conference. I was asked to give a personal perspective on ‘support and diagnosis of autistic mothers of autistic children’. I had little time to prepare and this was my first time speaking in public. As part of my preparation, I co-opted a small group of autistic mothers who I chat with online to help me identify the priorities for my talk. There was no attempt at random sampling in the choosing of my sources, this was not an academic study or an attempt to present objective findings. I chose them because I like and identify with them and it was our voice I wanted to present. I cannot speak for all autistic mothers, but I can speak for some. I pitched my presentation at an audience of professionals associated with the support, assessment and diagnosis of autistic mothers and autistic children. What follows is both a summary and an elaboration of my talk.

If you’re autistic, you’re autistic

Autistic women and girls are both under-diagnosed and, often, harder to diagnose than men and boys. If girls and women are autistic at near or equal rates to men and boys it follows that there is a huge population of autistic girls and women without a diagnosis. Increasing numbers of women, like me, are being assessed following the diagnosis of our children. If we consider that most autisms have a hereditary origin, it is likely that professionals working with autistic children are encountering many undiagnosed autistic mothers. Yet, services and access to provision and support are generally not very autism-friendly. Professionals seem to operate from a premise that mothers are neurotypical. This is problematic and it is this assumption that underpins these blog posts. Autistic mothers do not become autistic if or when they receive a formal diagnosis. It is not enough to make ‘reasonable adjustments’ and accommodations only for diagnosed women.

Achieving self-awareness

A common factor among many late diagnosed women is how adept we become at maintaining a pretence of competency. Masking, social echolalia and the performance of social roles, become a way of life for us. We slip between social realms trying to fit, but often failing to ‘pass for normal’. We look around and see our friends, family and strangers appear to engage effortlessly in the social world, and wonder why we find it so complicated and exhausting. Some women feel obliged to try to keep up. Others, like me, shrink their world as a protective measure, able to limit exposure to the bare essentials. We develop sophisticated coping mechanisms as a way to protect the facade. We might seek solace in solitude, in our routines, special interests, obsessions and sensory comforts. It is often when these carefully constructed protective networks begin to unravel that we seek diagnosis.

Despite having always been a bit odd, and never fitting in on any meaningful level, I had never considered that there might be a reason for this. I just though I was a bit crap! It was as if I had missed the basic lessons in being human, like being expected to do algebra when you haven’t been taught how to count. I was expected to form and maintain social relationships and exist in a social world where I had flunked the first hurdle. Something was amiss. It was when I started researching autism and Asperger Syndrome as an explanation for my son’s difficulties that I began to find my answers.

Reaching ‘tipping point’

It took over five years following my son’s diagnosis for me to book an assessment. Throughout those years I juggled a number of stressful and often competing demands. I was working, albeit part-time, in the increasingly stretched and under-resourced public sector. I was studying for a postgraduate degree, upon which I had enrolled on an impulsive whim. I organised, supervised and carried out renovations on our home. Through it all I was parenting, supporting and advocating for a child showing increasingly problematic behaviours and who was close to school refusal. Whilst my understanding of myself was increasing, I was too busy, too focused on meeting my son’s needs, and having them met at school, to consider making time for me. I was also worried that if I started to talk about me, by removing the masks and the constructs, there was a risk I would crumble. It was too risky.

The space to think about me came after my son started secondary school. Suddenly, he was well supported. School were, and still are, pro-active, responsive and caring. They meet his needs without fuss or fanfare and he is thriving. I came to a halt on the renovations and completed my studies. I had time. I began to read more widely about autistic girls and women, I started chatting to similar women on an online forum. I started to identify strongly with other autistic women, but the thought of assessment was terrifying. When you have spent your lifetime believing you are faulty, never quite measuring up against the norm, the last thing you want is professional verification of that!

As seems to be fairly common among us late diagnosed women, I reached my personal ‘tipping point’ when I could no longer maintain the facade of normal. For me, major changes at work, which impacted on my need for familiarity, routine and stability, were that ‘tipping point’. Whilst on a personal level I could accept my differences and accommodate my difficulties, at work I was subject to organisational needs. Increased work stress heightened my anxiety and exacerbated my sensory responses. Lifelong sleeping problems worsened. For the first time I did not want to go to work and dreaded Monday mornings. I was exhausted all the time. I needed ‘reasonable adjustments’ to enable me to function at work. I had to do something. I needed a diagnosis.

The pursuit of assessment

Requesting assessment as an adult is a big deal and we do not request it lightly. If anything, by the time we request assessment we have usually researched to the nth degree in our typically obsessive way. We don’t request assessment until we have satisfied ourselves that we are credible. The fear of being labelled faulty or damaged, rather than autistic, and of our needs not being taken seriously, is very real.

We then have to decide which avenue to pursue to have our conclusions validated. I knew that I was not comfortable pursuing diagnosis through the NHS. My years of masking, coupled with an apparent high level of ‘functioning’, and an inability to ask for help, meant that persuading my GP to refer me was too anxiety provoking. If I even got past that hurdle, I would then face a succession of gatekeepers in the mental health team. I was not prepared to enter a process out of my control, and where I was not certain that the clinicians were adequately experienced or knowledgeable to recognise the nuance and subtlety of the female presentation of autism. I had heard stories of women being refused referral due to eye contact with the GP, or because they had no family members who could remember early childhood development. I needed an alternative, where I could maintain control and choice, and most of all, someone who I would feel comfortable with and who I could trust and respect.

I chose to be assessed through a small charity experienced in assessing and supporting people with Asperger Syndrome, who had been recommended to me online. Even better, I had seen my assessor on television and liked what I saw! I was able to book an appointment for a time which suited me, and was seeing someone who felt familiar, I had the reins. Knowing who I was seeing, what her qualifications and experience were, booking an appointment which suited me and having time to prepare made a big difference. Many women find this part of the process highly anxiety-provoking. When you have worked so hard to hold yourself together for so long, it is not easy to submit yourself to a process. We often worry that assessors are trying to trick us, to catch us out, as if we are performing autism, rather than performing normal.

Diagnosis

In the discussions I have had online, nearly every woman who has been assessed has received a diagnosis of an autism spectrum disorder. Clinicians carrying out assessments need to consider how they can make the process itself supportive of autistic women. Us autistic women were autistic before our diagnoses, our needs as autistic women don’t start when we get a diagnosis, those needs were pre-existing. The internet means we read about and share our experiences, and often it is the bad experiences of others that we remember and which feed our anxiety. I was lucky. My assessment was held in a well designed and carefully arranged ‘sensory room’, with blackout blinds, bubble tubes and calming lighting effects, there were squishy sofas, nice tissues for my inevitable tears, and cups of tea. I think I recall being offered a crumpet!

Assessment is hard, it means opening up and being true, something many of us have resisted throughout our lives. It can also be liberating. As I spoke, and was prompted, questioned and challenged, I started to feel understood. I cannot find the words to describe my sense of relief when my assessor declared that, in her professional opinion, I met the profile of a woman with Asperger Syndrome.

Postscript: following my initial assessment I ‘upgraded’ and received a full clinical diagnosis of Autism Spectrum Disorder. While the initial assessment was sufficient for self-awareness and to secure me support and adjustments at work, it never felt quite complete. 

A brief note on my title

Deciding what to name this blog was much harder than I expected. I wanted something clear and logical. The name needed to broadcast the content in an explicit manner. I knew that autistic mothering would be the backdrop to my writings. How could I show that in a snappy title?

I decided that the words autistic and mother had to feature, and started playing with the words and variations. Mum, mummy and mom were quickly set aside, my son calls me by my name, and whilst I am his mother, I don’t feel like a mum, mummy or mom.

Coming up with anything original in the Internet era feels impossible. Every good name seems to be taken. I was drawn to ‘mothership’ as a concept, but there is an American special needs website using this name. Autisticmotherland came next. I like it as a single word. It reads differently when you separate the words.

For me, the name signifies two concepts which I hope will form this blog. I will be writing about autistic mothering, from the perspective of an autistic mother parenting an autistic child. I am hopeful too that I can use this platform as a way to show how late diagnosis can change a life. My journey as an autistic woman is only just beginning, but already I have a sense of having found ‘my people’, a virtual motherland, populated by other women like me.

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