shit I learned at #speakersday

I don’t usually swear in posts, but I do swear a lot when I speak, and I am writing this while I recover from a long drive, a couple of nights away from home and lots and lots of peopling, meaning my ability to put words together is a bit challenged, so I need to make full use of whatever vocabulary I can find. Yesterday I attended the National Autistic Society’s ‘Public speaking for autistic people’ course in Wrexham, 210 miles from home. It was brilliant and illuminating and I learned shitloads of stuff.

I learned that I really really like driving on motorways, especially if I imagine that I am appearing in a Top Gear challenge. My friend @PdaSoapbox was travelling by train from the opposite direction, and we supported and encouraged each other by text throughout the journey (I only texted when I stopped for breaks, not when driving). She was largely unaware that she was part of my imaginary challenge, and I don’t think she’s a Top Gear fan… but it made me laugh to myself as I drove, because, contrary to the stereotypes, us autistic people can imagine and we do do humour.

I learned that being drawn towards the written word is a pain in the arse when signs are bilingual. If there is written information within my field of vision I have to read it. It doesn’t matter what it is, I have to know what it says. This is fine with English language words, which I can scan and process quickly, but less so with Welsh. I have nothing against Wales or the Welsh language, but bilingual signs mean my brain tries to make sense of all the words, including the Welsh words, which I don’t have a hope in hell of decoding, but my brain has to give it a go just in case. I did not miss a turn until I crossed the border 😉

I learned that being among autistic women is perhaps the most empowering and comfortable place in the world to be. I have never felt so normal, so like other people, it was magical. Meeting people I’ve only ever interacted with on the internet in real life was like meeting up with the long lost friends I never knew I had.

I learned that friendships made online can be as strong, meaningful and real, and engender the same loyalties as those made in the ‘real world’.

I learned that I’m not the shy introvert I had always assumed myself to be. I haven’t been avoiding social interaction for most of a lifetime because I didn’t want to or didn’t need it. I’ve avoided it because it’s so hard when you don’t know and can’t follow the social rules of the majority neurotype. I actually love just chatting with people, singly and in groups, and yesterday I could do that without the complicated interchanges usually required. There were no raised eyebrows and affected manners, as people just did what they needed to do. Stripped bare of the tacit and often arbitrary rules of the typical social world, interaction became easy and natural. People and topics ebbed and flowed.

I learned that I am not able to easily switch between roles. As part of the day we had the opportunity to perform a brief presentation and receive feedback. I had not prepared one of my own as I knew it would make me more anxious on top of all the other anxieties. It’s not uncommon for me to make a decision about something without knowing why and then having my ‘Oh fuck, that’s why’ lightbulb moment later on. Partway through the morning yesterday I realised that my trepidation about doing a presentation was because of this struggle with switching between roles. To engage with the training and learn well, I needed to be in ‘listening and learning’ mode. To do a presentation I would need to be in ‘controlled and performing’ mode. There wasn’t time to switch roles and I knew as soon as the afternoon session began that I had made the right call, I was in no place to perform ‘speaker role’.

I learned more than I could have hoped to about public speaking. Sarah Hendrickx and the NAS training team should be commended for providing such a thoughtful and perfectly executed event.

Throughout my professional life I attended a lot of training, this may have been the first time I haven’t wanted a training day to end.

Thank you to everyone involved and everyone who attended.

What a day 🙂

Performing normal

I am beginning to think that us late diagnosed autistic adults deserve Oscars and BAFTAs for our performances. We study our roles and learn our parts with great dedication. We are method acting every day. We knock spots off Daniel Day-Lewis. We immerse ourselves in the worlds of those we seek to emulate. We often maintain the role every waking hour. We mostly do it without even noticing. We work hard to perform normal. We are unconsciously competent.

Until we can’t do it any more.

It starts in childhood and probably never really ends. Even when we have our autistic epiphany it’s a hard habit to break. It can be a useful skill if we use it wisely. It’s like an ultimate special talent. At the height of our performance career we slip chameleon-like among social worlds, studying our characters, always studying, trying to be better actors, better characters.

But over-use comes with a price. For us, it isn’t a role which we get to leave at the end of the contract. This is our life and performing normal is exhausting. Maintaining the roles we construct, often subconsciously, very often leads to our downfall. We risk losing ourselves in our performance.

If we are lucky enough to realise we are autistic, and we have sufficient resilience, confidence and support, we can free ourselves from the performance. This is where I am now. I am trying to drop the performance and be me. I have become more conscious of the roles I perform and can sense the changes from one role to another. It is unsettling and disconcerting to acknowledge the process as I shift through the social realms I inhabit and encounter. I have moments when I feel like I’m in a body-swap movie, like I am being inhabited by an interchangeable set of personalities and competencies.

Training for these roles starts from birth, we are continually measured against a set of criteria based on population averages. We are pushed to meet typical developmental milestones and encouraged to perform to the audience. We are applauded for using speech, for playing nicely, for sharing, for good manners and for following the rules. Some of us find these things harder but we learn quickly what is expected and we do our best. Even when we are teeny, we seek approval. We learn that compliance is good, challenging is bad. We are being shaped to fit the norms.

Girls are almost certainly more heavily burdened with neurotypical social, emotional and development expectations. School is where we undertake our apprenticeship. It is in school where we find our first role models, the happy social butterflies who make it all look so easy, so effortless. We try so hard to be like them. We might copy their interests, their style, their mannerisms as we desperately try to fit in, to be normal.

Some are lucky and find a niche in adulthood where they can bloom, able to drop the performance. Many start to experience deteriorating mental health. Some, like me, muddle along, performing normal and wondering why we find life so hard, and why are we so exhausted by normal when everyone else seems fine.

Autistic realisation brings new insight. As well as being more aware that I am performing I am also more aware and, perhaps more consciously, planning and preparing for every possible encounter. Every possible social encounter has to be considered and planned for. I draw on my history, trying to learn from my mistakes. I wish I could forget all the mistakes.

I go to bed planning the next day and I wake revising and rehearsing my plans. As I drive to work I am reminding myself of the potential subject matter I might encounter and ways I can show an interest in people’s lives, because that’s normal. Has anyone been on holiday? How was the night out? Is an ailment better? How was the move? I don’t need to remember what I need to do at work as that is on my list. But I also have to maintain a virtual list of things that I should remember about people’s lives. I am mostly not interested, but I do it anyway. Performing normal means being interested in other people and the trivialities of life.

Life is a long list of encounters, each with different expectations, some with very subtle differences. Lots of rules. Lots of roles.

In a typical day at work I have to adjust to the different social expectations of my immediate colleagues, the ones I share workspace with, people I know and bump into around the building, people I don’t know who I bump into and people I don’t know who invade our workspace. I need to be able to make requests of support staff and defer to senior staff. I have to adjust for client needs, though somehow that is easier as I am in my professional role and that’s my favourite work role.

Outside of work I have different roles to perform when thanking the postman, bumping into neighbours, attending school and medical appointments and meetings. Social interaction with friends requires even more planning as I fear getting it wrong and losing friends. I have lost many wonderful friends over the years when my performance was clearly not up to scratch.

My autistic realisation has helped me be more honest both with myself and my friends. I have disclosed my autism to my immediate colleagues, and am getting better at dropping the performance and being honest about what I need. I have noticed that when I drop my performance I am more animated, I gesticulate and I am just a little bit less inhibited. I am loosening up and freeing myself.

My son’s current favourite insult is to call me ‘normal’. I am normal. Normal for me.

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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