Recognition and support
Over the last decade it has become more widely accepted that autism is hereditary, with studies estimating that 80% of autistic people are autistic because of inherited genes rather than environmental factors. Logic subsequently follows that if you’re a professional supporting an autistic young person, then there is an 80% chance that at least one of their parents is also autistic.
There is a growing understanding that without proper recognition and support, autistic children are often misunderstood and struggle to thrive as a result. The same can be said of autistic adults.
Without proper recognition and support, autistic parents can often be viewed with concern by involved professionals due to parental presentation being misunderstood. Such a view can lead to autistic parents adopting defensive positions, which can create complexities within the parent – professional relationship.
Autistic parents with autistic children
As an autistic woman, and parent to two autistic children, I have navigated regular educational meetings for my children for over five years.
Having only been diagnosed as autistic myself within the last year, I was having to cope with a plethora of meetings with no adjustments made for my neurology type. As a consequence, professionals had openly described my manner within meetings as “Too emotional”, “Detail orientated” and “Not present”.
In fact, I was regularly overwhelmed by the pace of verbal information being delivered to me and the strain at having to process, reflect and respond in an equally immediate manner. My neurology responded by protecting itself from overload by “zoning out”.
Recovering from these meetings took time for me, and I was often unable to undertake additional strenuous tasks on the day following a meeting. As a parent, this is unsustainable and can potentially affect family functioning long-term.
Offering reasonable adjustments to autistic parents can be very straightforward but can shift a difficult relationship towards a productive one. This is of huge benefit to the young person in need of support.
With this in mind, I have compiled a list of adjustments and considerations that professionals can use to best support an autistic parent.
It’s always worth considering the sensory impact of any meeting arrangements or environment. Bright lights, strong smells, extraneous noise may cause discomfort or distraction to an autistic person. Focusing our strength on processing and/or attempting to ignore extra stimuli is exhausting and limits our ability to attend to the content of the meeting. Is there a low arousal alternative room available? Can curtains be drawn, windows open? Is the meeting room away from busier segments of the main building? Consider offering regular comfort breaks as respite.
Are parents familiar with the meeting venue? New places may cause preparatory anxiety which adds to the burden of attending. Sending parents maps, visual directions, building layouts and pictures as a standard precursor to attendance can really help lower this type of anxiety.
I hadn’t personally understood the full impact of attending physical meetings on my well-being until Covid-19 restrictions pushed all my meetings into the virtual realm. My post-meeting exhaustion has been minimal following this change which has in turn, increased my capacity to attend to the discussions fully.
However, every autistic person will have a different preference for a virtual platform. Some autistic people find telephone conversations extremely challenging, for example, and so offering a choice of platform may make this more bearable.
I have still found aspects of communicating via video call platforms excruciatingly painful. I can’t predict the social cues for when there is a conversational gap in order to offer my comments. I find the intensity of having faces filling the video frame very difficult – there is literally nowhere else to look but at a face, which isn’t great if eye contact is problematic or reading facial expressions is overwhelming. Luckily this is easily accommodated by allowing individual cameras to be switched off.
Dissemination of Information
One of the most important issues to consider when supporting autistic parents is how essential information is disseminated. Delivering critical information entirely through verbal communication offers the potential for dual-misunderstanding or misinterpretation. Plus, important details can quickly be lost during a fast-paced conversation. Many autistic people find processing verbal information while attending to formulating timely responses difficult. Consider the speed at which verbal information is given. Build pauses into the conversation flow to allow for additional processing. Can a note-taking service be offered, or signposted to? Can any of the information be delivered prior to the meeting or in a different format? Can visual presentations be utilised? Can clear printed information be given out?
Preparatory information given ahead of the meeting can really help to ensure discussions stay on track and also allows attendees to digest the information properly.
Being autistic does not ‘lessen’ with age. The communication preferences of autistic adults should be considered as much as their autistic children. I am still as flummoxed by a strange expression as I was at the age of 4. I still cannot pick up on inference or suggestion and communicate myself in a direct manner. Professionals should consider minimising the use of idioms and metaphors. And only use professional jargon or acronyms if an agreed understanding has been established first.
Check to ensure that there is a shared understanding with regards to the major issues and ensure that any goals or outcomes are clearly stipulated. When I request reasonable adjustments for myself, I always ask for a day or two following a meeting in which I can ask further questions or seek further clarity via email.
Parents of autistic children may not recognise or consider themselves as neurodiverse. Aiming to create an accessible meeting space from the outset is the most inclusive approach and provides the best opportunity for a successful parent-professional relationship.
Alice Running is an autistic woman and mother to two autistic children. She writes exclusively about autism in order to share autistic experience and contemplate inclusivity.
Facebook at @AliceRunningAutVocate
Twitter at @AliceRunning1