Autism and “small talk”. Should we pander to social convention?

“Small talk” – the social convention of making polite conversation about trivial matters.

Apparently, it is considered an important pre-requisite to forming lasting and meaningful relationships.

I have always experienced it as both painful and pointless.

There was a specific point in my life where it became excruciatingly horrific for me to partake in “small talk” – the “school playground years” – when I would be expected to contribute to conversation around lunchbox contents and school uniform with other mothers. I was terrible at it. The other mothers would talk at me about their new kitchen surfaces or weekend trip to the hairdressers. I would listen in silence, desperately trying to formulate an appropriate response but always never managing to. Gradually, the other mothers stopped talking at me and forged friendships with others, over the banalities of life.

I had no inclination that I was autistic but neither had I managed to acquire enough “social communication skills” to integrate fully into neuro-typical life. Now that I know I am autistic, I am pleased that I didn’t waste precious moments of my life talking about utter nonsense. I feel no loss for the friendships that could have been formed had I known how to correctly perform those social niceties. A life condemned to surface affability with no depth or genuine connection seems much lonelier, in my opinion.

My preference for fewer but more substantial social connections – with others that share genuine common interests – is the correct approach for me. But what about my children? As autistic young men they are both happy enough with their own company but still want to connect with others in a meaningful way. Should I teach them the skill of “small talk” to ease their transition into adulthood? Or is it a neurotypical concept that shouldn’t be forced upon a neuro-divergent thinker? At what point do we say that being autistic is enough and we do not need to change; other people should try harder to relate to us?

I spoke to a speech and language therapist recently about this. She was adamant that the more these skills are practiced, the less anxiety provoking they are, the easier they become and the easier social bonds are formed. This thought process is logical; anxiety does lessen the more an issue is normalised or a skill practised. But that doesn’t necessarily mean it is the morally correct approach. If autistic people were the majority, then perhaps “small talk” social bonding would involve mutual fact sharing or immediate, in-depth analyis of a given subject matter instead. The importance of “small talk” is only a matter of perspective, and there are many alternative ways to forge deeper social connections – like seeking out groups or activities that share our keen interests, and bonding through shared knowledge.

My position has shifted from considering “small talk” a necessary evil that must be embarked upon in order to create friendships, to viewing the acquisition of such skills as nothing more than pandering to a nero-typical majority. I don’t want to be any less autistic than I am, and I certainly don’t want my children to feel any pressure to be anything other than authentically themselves.

Everyday Discrimination – 5 phrases that, as an autistic person, I hate to hear.

What is ableism?

Essentially, ableism is discrimination against disabled people. This discrimination may be delivered directly or in-directly. A person acting in an ableist way, may not even recognise that they are behaving in a discriminatory manner – such is the insidious nature of able privilege that runs through society.

An encounter with a flippant, ableist comment (intended or not) may leave the recipient feeling marginalised or separate from the rest of society.

I am confident that most people would recognise ableism in its most potent and direct forms; name-calling, mocking, mimicking. But how many of us recognise the subtle ways in which disability discrimination occurs?

I’m autistic and so are my children. In this post I consider the comments and behaviour I have encountered that made me feel that we are just not quite good enough – that autistic minds are not as desirable as neuro-typical ones.

“I’m sorry!”

I’ve lost count of the numerous times other people have replied with “I’m sorry” when I have shared with them either mine or my children’s autism diagnosis. The issue is that we do not know why they are sorry. Are they apologising on behalf of society for the gross inequality and injustices that we regularly face, such as the struggle to access basic health and education services? Or are they offering sympathy for our differences, for the recognition that we will never be quite like “everyone else”? “I’m sorry”, then equates to a tokenistic offer of unnecessary comfort. My family are proud neuro-divergent representatives and any sympathy directed our way is misplaced.

Our life is occasionally harder than others but this is purely because of how unadaptive the outside world is to our needs. Stand by us in recognition of this, instead of offering apologies. A simple “yes” is enough.

“Everyone thinks / feels like that.”

Imagine that I have shared significant details about my individual autistic experience. To divulge such intimate information I will have considered the recipient worthy and in sharing this information I will have expected both understanding and acceptance. To be met with the response of “everyone feels like that”, immediately dismisses the validity of my experience. It also shuts down any further conversation, effectively silencing me.

I am also fairly confident that not everyone does experience life in the same way. It is often the intensity of feeling that characterises the autistic experience – so yes, we may all feel uncomfortable sitting underneath bright, white lighting but we will not all be experiencing this sensation as searing, intolerable pain.

“He/she seems normal to me.”

When spoken by peers, the phrase “she seems normal to me” indicates harmless ignorance at worst but when spoken by professionals (and I have heard this uttered repeatedly by professionals when attempting to discuss my children’s support needs) the ramifications are serious. A bone-fide diagnosis is being brought into question. In my experience it is usually a first tier professional (SenCo) questioning the judgement of third or fourth tier professional (Psychologist). By verbalising doubt, what they’re actually implying is that the diagnosis is made up or exagerrated – fabricated. Not only does this dismiss the very real-life experience of an autistic individual but is tantamount to emotional abuse (gaslighting) given the distressing impact upon the person whose diagnosis is being questioned.

Autism is considered a “hidden disability” due to the often non-visible nature of autistic presentation. An experienced professional or accepting ally may be very capable of noticing an individual’s autistic presentation, so to remark that an autistic person appears “normal” is to only highlight the in-experience of the person making the remark.

“I hear what you’re saying – we’ll consult with the relevant groups.”

Trying to raise the autistic voice within the status quo of neuro-typical institutions is figuratively akin to banging one’s head against a wall. The status quo do not want to change. They may say that they do and they may welcome consultation with community voices so as to provide the relevant “tick box” go-ahead for their project, but they do not want to commit to the expensive structural changes needed for inclusivity.

Twice, I have attempted to vocalise in meetings how a policy would impact upon the lives of autistic people. And on both occasions I was told that they would consult with the relevant groups when necessary. On the surface, this appears reasonable. In practice, it is a tool to silence a lone voice. Even though neuro-typical voices are listened to individually, a disabled voice requires a collective voice in order to be taken seriously.

“It’s just a label!”

Why do some able people steer away from acknowledging a “label”? Perhaps because a “label” is a medicalisation of a lived experience? Perhaps because they are determined to view the person and not the diagnosis, and “labels” subsequently make them feel uncomfortable? Being so caught up in how a “label” makes them feel, they are perhaps forgetting to establish how an individual with a diagnosis wishes to be identified. If an autistic person does not want to be identified by a diagnostic term then that is their decision and should be respected. Likewise, the autonomy of an individual to identify as autistic should also be respected – it is not for any other person to undermine another’s identity by claiming “it’s just a label”. Autism is not just a diagnostic signpost, it is a “membership card” for a collective peer group, with many autistic people feeling pride in their alternativeness. A “label” is also a great way to extend the visibility of an otherwise hidden collective of people. I suppose there is power in collectivism: restricting the application of a “label” dismantles a group of people to separate individuals which in turn restricts the power of their collective voice.

While these types of comments may be fairly innocuous when considered on an individual level, over time a pattern emerges – a pattern which serves to maintain structural inequality for all disabled people.

What a Tory landslide means for my autistic family…

I am a single mother. My children are thought of as “ill-raised, ignorant, aggressive and illegitimate” by our Prime Minister. Except they’re not. They’re autistic. And as a family, we rely very heavily upon the welfare state for our very existence.

I am an articulate, educated woman who cannot access the world of work outside of the home because my children cannot access education out of the home. This cash -starved, broken educational system is not flexible enough to accommodate their educational needs
despite many wonderful individuals giving it their best shot. I count myself lucky that I have not been dragged in front of a court for their “non attendance”. Many other families with children who cannot attend school due to their debilitating anxiety are
penalised in such a way.

Because diagnoses weren’t given early enough (waiting lists of over two years) my children developed chronic anxiety due to struggling along without having their needs met or even recognised.

Our local Children’s Mental Health service (Camhs) is overstretched and practitioners regularly cancel my children’s appointments. Simultaneously we are threatened with being struck from their services should we, as patients, fail to attend two appointments.
Missing appointments is inevitable when managing children whose very conditions you are seeking help with make it difficult to leave the house.

We should have regular Speech and Language Therapy. We should have regular Occupational Therapy. Every professional in Leeds knows that this will never happen. There are no practitioners available who specialise in the type of occupational therapy that my children
need. None.

We are housed in social housing but the adaptations promised to us – adaptations necessary for my children’s particular (dis)abilities – have never materialised.

I pay for as much as I can privately, out of my limited income. I receive Carers Allowance which equates to a wage of £1.60 per hour, for 40 hours per week. For that, I operate in roles of teacher, carer, social worker and therapist. I will never be able to
pay back my student loan.

There are no safeguarding issues for my children so we receive no social care support. I have tried to navigate the Direct Payment system which supposedly allows me to employ an assistant for 6 hours per week. The bureaucracy involved is complex, relentless
and professionals regularly hold up paperwork. Despite my PA working for me for 3 months, she still has not been paid by the council. I have been paying for her privately, from my Carers Allowance.

All this has been enabled by a Conservative government with a negligible majority. Along with every other vulnerable family, I am in terror as to what our lives will be like under a Conservative government with a large majority

It is a self fulfilling prophecy. Without the correct education, mental health support and work opportunities, my children will be viewed as nothing but “aggressive and ignorant” by a society now given license from the top to be nasty to one another.

How to make social invitations autism friendly.

Christmas can be a particularly difficult time of year for many groups of people. There is a presumption that we will all be happily socialising, flitting from party to party or making seasonal visits to friends and family. These seasonal expectations are delivered to us unceasingly via the endless stream of Christmas advertising. Knowing that we are unlikely to be doing so just adds to feelings of isolation. Autistic people can and do desire social contact and want to be included in life – and this can include sharing celebrations with others.
As an autistic woman, I veer between observing merriment from afar and wishing that were me and knowing my own limits – of course I can’t cope with attending a house party with unknown amounts of people in attendance. When I do receive an invitation, or we as a family do, it is almost always rejected by us. Not because we unlike the person extending the invitation but because the invitation or social occasion isn’t accessible for us. I sometimes wonder whether this is done with purpose – to ensure that we are unable to attend – but that is my anxiety over analysing a situation. I do however, feel that some invitations are tokenistic, to demonstrate to the world that they, the host, view people beyond labels. But without real thought about what an autistic person’s needs might be, it is very unlikely that an invitation can be accepted.
With this in mind, here are my “top tips” for creating an accessible invitation for an autistic person.

1. Give the invitation with enough time for preparation. A week in advance is useful. This allows enough time to mentally prepare and plan for changes to our forthcoming schedule.
2. Accompany the invitation with some information about the venue; a menu, a website, an address or map. Researching these details can help to reduce our worries relating to the new or unknown.
3. Make clear and specific plans; ensure that nothing is vague or open to differing interpretations. Definite timings and information relating to who else is likely to attend, helps us to feel secure and comfortable. “Going with the flow” or “seeing what happens on the day” raises our anxieties and induces panic.
4. Try not to make any unnecessary changes to the event. If change is unavoidable, give as much warning as possible. If we have committed to the original plan, then we will need a little more time to readjust and assess whether we can still attend. Surprises can be really unsettling for us and we welcome solid, definites.
5. Think about the venue. Is it accessible for us or will we be placed under significant sensory bombardment? Think about the likelihood of crowds, noise, bright lights, flashing lights, strong smells, spontaneous happenings. If these conditions are likely, are there nearby quieter spaces where we can recuperate?

For my son’s last birthday, we wanted to host a family meal at a local pub. We researched the venue well, asking which areas and times were busy. We negotiated ourselves a quiet slot whilst ensuring we were near enough to the playground for sensory breaks. We took copies of the menu and sent those with our invitations, knowing that our guests all had differing food tolerances. We did some preliminary familiarisation on a quieter day and spent some time scrolling through their Facebook pictures. The benefit to all this research was that we all had a great time, and there was no post event distress.

A little bit of extra preparatory organisation can make a big difference to an autistic person’s inclusion.

Autistic voices and the climate debate – public transport inclusion.

More cities and towns around the UK are declaring a climate emergency and setting carbon neutral targets in response. Moving travel reliance towards public transport will play a large part in achieving these targets. My autistic family has never had personal access to a car and has been reliant upon buses and trains to make any journey that can’t be taken by walking. We know, by experience, how inaccessible parts of our public transport network can be for autistic families and those with hidden disabilities. Many autistic people will want to play an active and supportive role in tackling the climate emergency by travelling in the most carbon responsible way. For us to participate however, we will need a public transport infrastructure that is inclusive. It seems logical to me to discuss and consider inclusivity for all when greening our transport systems and that way we can ensure that accessibility is planned from the outset, rather than added at a later date as a tokenistic gesture.

When accessibility is designed from conception then true inclusion can be made possible.

Raising my opinions locally has been an uncomfortable experience – my concerns for provision of equality have been taken as criticism to any proposed plans.

There is no need to choose between providing low carbon travel and providing equal access to travel – the two can happily occur together if our voices are given adequate platforms from which to input.

Many autistic accessibility needs are easily accommodated but may not have been considered as barriers to travel by a non-autistic project leader, for example. And for this reason, it is imperative to have autistic and other “minority” voices contribute to our council led climate conversations.

Some adjustments can be made easily – allocating specific sections that are dimly lit and are quiet zones is helpful. Other adjustments will require a true commitment to inclusion, such as providing all staff with Autism Awareness training or increasing the number and positioning of priority seating. Some adjustments will be considered more ambitious due to needing higher level of funding – having a readily available supply of adapted trikes for cycling scheme participation, having more than one disabled bay on a train or bus or adopting large scale lanyard schemes.

Ideally, consideration will be given to stations and bus stops too. Ensuring that maps, touch screens and timetables are offered in multiple formats (including in dyslexia friendly or visual systems rather than written formats) and quiet, safe waiting areas are provided. And this brings me back to my earlier point of designing for inclusion from the start. It is financially more cost effective to already have systems that work well for everyone than be required to make expensive changes as an after-thought.

I therefore urge community leaders to ensure that climate debates take representatives from the full spectrum of hidden disabilities. Listen to our voices and understand our barriers to using public transport too, they are just as valid as other people’s.

At a juncture when society is needing to rapidly change in order to survive, to not listen to us is to leave us behind.

Autism and misconceptions – you can’t be autistic because…

Last week I had the pleasure of talking with Liz Green at BBC Radio Leeds about the misconceptions surrounding autism. It was really great to have such a supportive platform to chat about daily life as an autistic person and Mum to autistic children.

https://www.bbc.co.uk/programmes/p07mvqk8

The conversation continued back at home with my eldest son and we spent a long time discussing the occasions that we had encountered the attitude “you / he can’t be autistic because…”

These were largely met before gaining a diagnosis and as such impacted upon that diagnostic procedure because unfortunately, these attitudes were held by first tier professionals such as the school SenCo or GP, resulting in the conclusion that there were “no issues”.

It took many years of system struggle to have my children’s needs as autistic children recognised which in turn led to strong and entrenched anxiety around school. Misconceptions surrounding autistic presentations were at the root of this :

“He can’t be autistic because he’s too well behaved.”

Many autistic people are rule abiding and care so much about doing something wrong or in the wrong way that they will present with impeccable behaviour. Anxiety levels at having to remain in an environment which is hostile to the senses can become so high that a person may become almost rigid with fear – appearing as quiet, still and calm.

“He can’t be autistic because he has friends.”

Many, many autistic children rely heavily on a particular friend to navigate the social world on their behalf – to act as interpreter and mentor. Friends also help with emotional regulation and support. A supportive friend can easily mask any struggles that an autistic person may be experiencing.

Early years friendships are often highly structured by adults or activities which is really, naturally inclusive – sports activities are brilliant at providing all participants with clear rules of engagement.

Plus also – newsflash – autistic people may desire friendships just as many other people do!

“He can’t be autistic because he has empathy.”

To be succinct – autism is not psychopathy. Every autistic person I know (of) cares (too?) deeply about other people or animals and are very often drawn to issues of great social or moral justice. My eldest son is a compassionate vegan and my youngest son is outraged by the marginalisation of the Welsh language within the UK.

“He can’t be autistic because he’s too clever.”

Autism often occurs alongside a learning difficulty (dyslexia, dysgraphia…) but these “conditions” are separate to autism. An autistic person may or may not have an additional specific learning difference that coexists alongside autism.

An autistic person who is academically capable or gifted will still have difficulties in other areas of life. Just like any other person, an autistic person will have strengths and weaknesses individual to them and maybe even contradictory within themselves.

“He can’t be autistic because he’s too imaginative or creative.”

Difficulties with social imagination is cited as a diagnostic criteria for autism but I have met many professionals (and non professionals) who conflate this with lacking in imagination. Social imagination is the ability to imagine what others are thinking and feeling in response to something or is the ability to perceive yourself from the perspective of others.

Some people consider autism as beneficial to achieving unique creativity as an autistic mind considers the world from a uniquely “other” position.

The danger of peddling these misconceptions is twofold: not only do they impact upon obtaining a timely diagnosis but they provide a great disservice to an autistic person by either limiting their abilities or minimising things that are a struggle.

Supporting our children with individual needs to rebel!

I remember well the strong desire for independence at 17. To separate from my parents by expressing my individuality and desire for adventure. It can be a very natural “rite of passage” – with part of the fun perhaps in pushing boundaries and trying to cause mild, familial outrage.

My 17 year old, autistic, son is just beginning to take those tentative steps towards adulthood and I have found myself supporting him in rebellion to the backdrop of “I can’t believe she’s letting him do that.”

Attitudes such as these are steeped in cultural discrimination against those with (dis) abilities. Because our children are “disabled” we must treat them differently to all other teenagers? They’re suddenly not allowed to explore their own identities?

Katie Price receives a lot of criticism for “allowing” her son Harvey to have an Instagram account of his own. This implies that she should be protecting him from the world and segregating him from what is considered a standard teenage activity. Most young people do not require permission to access the online sphere and so to be treated equally neither should a disabled young person. I believe she is right to argue that he should have access to such a typical pastime.

It is worth noting that there is a difference between facilitating access to a public sphere and ensuring that a person’s individual needs (including safeguarding and well being) are met while participating within that public space. Having access is about equality and all young people should have equal access to activities on par with non-disabled peers.

As my son’s “official” carer and appointee, I am in somewhat of a paradoxical situation. He wants to venture out of the home and make his political voice heard in the public sphere. As his Mum, I could consider setting boundaries for behaviour, types of activity etc that I find appropriate but I am so mindful that – unlike a neurotypical peer – he cannot just storm off and do as he pleases in defiance. If I personally disagree with something he chooses to do and respond in a way that removes my parental support then I am also removing the support he requires to access the outside world – and this is wrong and abelist.

It is a right that young people be able to live their lives with self determination and freedom of choice. As a parent/carer it is my duty to ensure that my son has these freedoms in the same way that his neurotypical peers do, and I am prepared for that meaning I may have to step out of my own comfort zone in order to provide the access support that he requires.