Friday, April 15, 2016

Could Do Better: To Professionals Working with Autistic Mothers of Autistic Children

Mother & Child
Photo © Georgie Sharp. Creative Commons License.
[image: Reclining white mother with dark hair, seen
from the side, looking at an infant lying on her lap.]
TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today's story is from Autisticmotherland, on what professionals need to know about supporting -- and diagnosing -- autistic parents of autistic children.

Autisticmotherland
www.autisticmotherland.com

In early March 2016 I spoke at the National Autistic Society's Professional Conference on the topic of "Support and diagnosis of autistic mothers." The talk and subject matter proved popular with the audience and I decided to write it up as a way to both summarise and explore the issues. The essay which follows is part of a three part linked series of blog posts (which I hope you will read!). 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, so, though much will also apply to autistic fathers, I am adopting a female default.

In my previous post Hiding in Plain Sight, I wrote about how 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 our children, and what recommendations you make for them. We know you often think it’s us mothers causing the problems.

But are you judging us parents against the right model? Could you take a moment to consider whether that mother (and, let's 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 provisions 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 that 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" until the end of a session. By this time, we autistic parents 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, as does silencing our phones, using caller display, and relying 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: An Easy Solution.

Considering that autism professionals must know how we autistics struggle with verbal communications, it is troubling how few 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, but she said to call if I had a problem, so 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). A particular problem is letters asking me to make a phone call. 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 may 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 we 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 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 instill confidence in parents of newly diagnosed children. In it, Stanton shares a common profile of many mothers of autistic children seeking diagnosis and ‘treatment’/provision. I reproduce it, with his comments in parentheses, 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 above use of the word victim provides us with a clue. This is not a list of traits of parents of autsitic childre, but rather from an FBI profile of parents with Munchausen’s Syndrome by Proxy (MBP) offenders (MBP is now known clinically as Factitious Disorder imposed on another).

Is it any wonder we parents of autistic 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. But 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) accusations are 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, do not jump to a mother blaming conclusion. Remind yourself that the "refrigerator mother" theory has been de-bunked, and 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 also 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.

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