Encouraging and developing self-advocacy in our children and why the language we use matters

Image shows the sea in the background, with a close up seagull to the right with its beak wide open, below the beak and centred on the image white text reads 'How to talk so kids will learn how to speak up for themselves'

I really, really, really, don’t like the term ‘special needs’. I don’t particularly like the term ‘special educational needs’ much either, and can get a bit twitchy when the acronyms are used as prefixes, for example ‘SN child’ or ‘SEN child’. Urgh, it’s the ‘special’ bit I think. Scotland uses ‘additional support needs’ which grates less, and additional feels more neutral than special, but ASN is phonetically a bit too close to the old ESN acronym for ‘educationally sub-normal’, which was particularly awful.

‘Special needs’ is often used as a way to avoid using the words disabled and disability when describing, err, disabled children. Referring to adults as having, or being (WTF), ‘special needs’ seems reserved for those with learning/intellectual disabilities, when it’s typically used to pity and infantilise. The way that ‘special’ has become used as a way to insult and demean suggests to me it’s time for a re-think.

I’m aware that ‘special needs’ and ‘special educational needs’ are also used to describe children who aren’t disabled. It’s probably helpful to have an umbrella term for both transient and enduring support needs, particularly in schools. I think my preference would simply be ‘additional needs’ and/or ‘additional educational needs’. Both seem more accurate and less loaded and possibly harder to corrupt into terms of abuse. Maybe.

But, what bothers me most is that the language we use to describe disabled children, and to explain disability and support to disabled children, can make developing self-awareness and self-advocacy harder. I know that not all disabled children will be able to advocate for themselves, but for those that will, or those who might, I have some suggestions:

Use words that they’ll use as adults

Think about the words that adult services and adult self-advocates use. My son was diagnosed with Asperger Syndrome when he was 6 years old, but we’ve interchangeably used Aspergers, autism, autistic and autism spectrum/autistic spectrum. I’d like to say this was a brilliant bit of forward-thinking, but it wasn’t, it was purely accidental and largely resulted from my own dithering around the person-first language I’d been trained in and the identity-first language that felt more personal and powerful. Alongside using the word disabled, and other terms that are specific to what disables him, he’s developed a broad and varied vocabulary, not just to choose for himself, but so that he isn’t stymied when he encounters someone who uses different terms.

My hope is that as he approaches adulthood he is reasonably well-equipped to engage with both professionals/service providers and with other autistic and disabled advocates and activists. This would be so much harder if he’d only heard us describe him as ‘being special’, having ‘special needs’ or if, like some parents, we’d never even told him his diagnosis.

Don’t minimise or rely on cutesy words

Words like autism and disability continue to scare some parents. It’s understandable given that the discourse of child development uses words and phrases like ‘risk’ and ‘red flag’ (and delay, disorder and failure) to describe and highlight anomalies (I view anomalies as a neutral term, different not less and all that). Parents, teachers and clinicians often skirt around language, avoiding those apparently scary words, and try to use what’s seen as more child-friendly language to describe children. For example (and this is not exhaustive!):

Aspie

Autie

Fidgety

Shy

Special

Highly sensitive

Indigo child

Twice exceptional

Sensitive

Quirky

Different

Fussy

Spectrummy

Wriggly

Slow

It’s not that we should never use these words, I just think they shouldn’t be the only words we use. It’s a bit like teaching children anatomical terms for their bodies, we need to provide children with the correct terms to describe themselves as well as their bodies.

(Also, try to avoid using words which suggest naughtiness or nastiness, even if you think they can’t hear or understand you)

Model advocacy

Try not to hide what you do to advocate for your child from your child. As far as is possible, involve and explain what you are doing and why, especially as your child gets older. Whether it’s sending an email to school, making an application for extra support, asking for help, or filling in a disability benefit claim, talk about it and involve your child, as one day they might or will need to do these things for themselves. Involving and engaging children in their support and reviews not only reminds professionals that there’s a real child involved, it also gives our children a chance to be a part of the process and learn new and useful skills.

If you are autistic/disabled yourself, or have any support needs, talk to your child about it. I am guilty of unintentionally hiding how hard some things are for me, but I’m trying to be more open and honest about what supports I’ve had that have helped me live, work and study better.

Encourage challenge

Don’t be a doormat, show your child that you will stand up for yours and theirs and other peoples rights. If they spot an injustice help them address it, write an email together or go and complain. Discuss what’s going on in the world and explore the sorts of things ordinary people have done and can do to make a difference.

Don’t force compliance

This is probably my biggest worry with many of the interventions used for autistic children. Whether it’s ABA or social stories or emotional literacy, or whatever school and professionals are offering, we need to check and double check that our children aren’t being taught or conditioned to ignore their own discomfort. Teaching and supporting self-advocacy and autonomy, and especially bodily autonomy, is vital. For more on autonomy, see this post.

Final words

The words we use to describe our children become the words they use to describe themselves. These words and the language we give our children to describe themselves matter. Hopefully, our children will be adults for far longer than they will have been children, so getting the foundations right, giving our children words and language and skills which empower them, which make them feel good about themselves, perhaps which enable them to find their community, and which help them self-advocate, matters.

Invisible disability and classroom behaviour management: an analogy

Image shows a tabletop covered in brightly coloured paper and craft materials, overload with purple text stating ‘punishment doesn’t teach skills’.

Having spent far too many hours, weeks and years posting in online parenting forums, a regular feature is a teacher or parent complaining about the behaviour of an autistic child in the classroom. Having been the parent of ‘that autistic child’ being complained about, I have always found those kind of posts hard to deal with. I know that I did everything I could to support my son to learn the skills he needed, and to help him find better ways to communicate his feelings and interact with his peers. But it takes time, and it requires support from teaching staff and understanding from other parents and children.

Autistic and other disabled children have as much right to be in a mainstream classroom as their non-autistic and non-disabled peers. Legal responsibilities under education and equality laws require mainstream schools (in all but exceptional cases) to support children’s needs.

One of the biggest problems, of course, is that autism is an ‘invisible disability’, where autistic people like me (or my son or maybe you or your child) look like any other ordinary person. You can’t see my autism. You can’t see the things that make me autistic. You can only see my reactions to things. You might think that those reactions, those behaviours, are my autism, but they’re not. They’re just what I do, not who I am.

Getting support for any disabled child in school is often a battle, and I don’t want to suggest that children with more visible disabilities receive perfect or even ‘good enough’ provision, because far too often they do not. However, when a child has a hidden disability, and when they exhibit behaviour that looks just like ‘naughty behaviour’, it can be hard to get parents and teaching staff to understand that punishing the child for manifestations of their disability will not be helpful.

Some time ago, I wrote a reply on a forum where a parent was fuming that an autistic child in her child’s class was not being punished for ‘bad behaviour’. Because the child ‘looked normal’ the parent was pressing for the child to be ‘treated like everyone else’. I wanted to make the point that it was a futile request, and that what the child needed was to be taught the skills he needed, because punishment does not teach skills.

This is what I said:

Imagine the child had a different disability, say one that requires him to use a wheelchair. He keeps running over children’s feet and bumping into children, hurting them. He might have broken their toes or knocked them into furniture. It’s not because he wants to, but what if nobody has taught him how to steer and use the brakes? The child you are complaining about, like many other autistic children, needs to be taught to steer and stop his impulsive and explosive behaviours. Just like punishing the child learning to use his wheelchair won’t teach him how to steer and stop the wheelchair, punishing an autistic child for lashing out and exploding won’t teach him how to steer and stop his reactions. Someone needs to take the time to teach, model and practise appropriate ways to communicate and interact.

Punishment doesn’t teach skills.

From ‘autism mom’ to autistic mother

image shows a wooden bridge across a stream in a woodland setting, with ‘from ‘autism mom’ to autistic mother’ in white text

‘Autism mom’ is a term often used by, and to describe, non-autistic mothers of autistic children. It’s a sort of identity, signifying her interest in and connection to autism. ‘Autism moms’ wear jigsaw piece embellished slogans, share memes about their ‘special children’, light it up blue and support Autism Speaks. They want to solve the puzzle of autism and unlock their children from their autistic prisons.

‘Autism moms’ are often passionate about getting the best treatments for their autistic children and keen to measure and compare progress. They love their autistic children and want to cure them of their autism. They spend their savings and pension pots on expensive treatments, some fairly benign, others fairly harmful.

‘Autism moms’ talk of their despair, their fear and the horrors of their daily lives. They understand when fellow ‘autism moms’ murder their own autistic children, because they understand the despair and the the nightmare of autism parenting. They raise funds for research and rejoice at scientific discoveries which suggest a cause for autism, hopeful that cause might lead to cure and prevention.

‘Autism moms’ are often criticised by adult autistic activists for not properly understanding autism. When it is suggested that the path they tread is misguided or dangerous, ‘autism mom’ claims that her child is more severe or more different to the autistic adult, that she knows her child best and has their child’s best interests at heart.

‘Autism moms’ are also criticised for wanting to cure autism, for striving to take away an essential part of their children’s personhood. Autistic activists argue that autism is a neurological variant, not a disease or affliction, and that acceptance and accommodations are what’s needed, not treatments and cures. ‘Autism moms’ are derided for discussing the day to day challenges of parenting their autistic children and told to listen to and be guided by autistic adults.

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My introduction to autism began as a (seemingly) non-autistic parent to an autistic child. I was never a full-on ‘autism mom’ as described by the gratuitous stereotype above, but I can relate to the sentiment. I shared the worst and the best of my son’s behaviour and development on social media (albeit anonymously). I rejoiced when he behaved more like, and showed signs of development in line with, his non-autistic peers. I read and read and read to find ways to help him develop his emotional and social skills. I tried to help him ‘fit in’ with his non-autistic peers and shuddered with embarrassment when he showed his autism in public.

I looked for the magic bullet to help him overcome the problems of his autism and be more like his typically developing peers. I wanted his life to be easier and happier.

Parents (almost always) want the best for their children, we certainly don’t want our children to struggle. From the moment they’re born our children are measured, weighed, charted and checked, their progress against developmental norms compared and recorded. As parents we watch for signs of the next steps, celebrating when they make good progress or are ahead of the curve, worrying when we see delays. We see our children among their peers and cannot help but compare. Our children will grow up into a world made for norms. We want to smooth the path. We worry more. We do more. The search for the elusive key becomes all consuming.

I understand why ‘autism moms’ wear themselves out trying to ‘fix’ their autistic children. I understand why they want to identify the causes of autism and prevent more hardships and heartbreak. Parenting an autistic child in a world built upon and for norms is not easy. Lack of understanding, poor educational options, constant battles for provision and support, balancing needs and resources within the family, it is hard and it often feels relentless.

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As I meander through this new world, with my newfound autistic identity, I struggle at times to consolidate the different perspectives. On the one hand, I am a parent to a child who has had way more struggles than a child should, and I want to do everything in my power to ameliorate those struggles, whilst on the other hand I want to celebrate his (and my) differences, and glory in the wonder of our neurodivergence.

I listen when autistic adults offer advice to parents of autistic children. I read carefully when autistic adults write articles criticising ‘autism moms’ and their choices. I constantly compare what’s being discussed to my own parenting, wondering if I measure up, am I doing my son a disservice, am I good enough? After a lifetime of never fitting in, I can’t help but wonder where I fit. I still feel as if I have a foot in the warm shallow end of both ‘sides’.

The reality is that it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.

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I started writing this post nearly 2 years ago and had planned it (rather grandiosely perhaps) as a way to try and bridge the gap between what sometimes feels like the warring factions of ‘autism moms’ and autistic activists. I really struggle when I read accounts by autistic adults who are not parents themselves (for example Temple Grandin’s ‘The Loving Push’ book) giving parenting advice to parents of autistic children. I’m not sure non-parents can ever really understand being a parent any more than non-autistics can ever really understand being autistic.

I also struggle when non-autistic parents of autistic children are told they just need to understand and listen to their child better, as if that’s the magic answer. My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children. I didn’t have all the skills I needed to parent my own child so how can I know what’s best for another child, who is not part of my family?

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I know I am not alone as a parent trying to balance preparing my child for a life in a neurotypical-centric world whilst trying to preserve his right to be his own autonomous autistic self. It can be a tricky balance, and I often worry I’m missing something important. I do not agree with many ‘autism moms’ who see ‘normal’ and non-autistic as the ideal to aim and fight for. I do not see compliance with neurotypical expectations as desirable, in fact I see it as antithetical to self-advocacy.

If I can send one message to ‘autism mom’ it’s to encourage and prioritise your child’s autonomy over and above everything else, for this is what will help keep them safe in the future.

For more on autonomy, please read Jamie Knight’s article here:

Spoons and other metaphors: how I use my social care budget

Looking back and thinking forward

Parenting, hindsight and independence

Being the parent of an autistic child (or any child with additional needs) brings a whole load of extra challenges and expectations. I can’t speak for parents of those with the highest support needs, but as a ‘can almost pass for normal some of the time if the conditions are perfect’ autistic parent of a ‘can sometimes almost pass for normal if the conditions are perfect and he wants to’ autistic kid, it’s not as simple as intellectual ability plus verbal skills equals capable of independent living immediately upon reaching adulthood.

Despite the fact we know that autistic people often have ‘spiky profiles’*, ‘uneven development’ and ‘splinter skills’ there can be a lot of pressure to ‘support development’ and ‘encourage independence’. We often internalise the message that we need to be pushing our children to ‘keep up’, ‘catch up’ and ‘make progress’, and can be left feeling incompetent and inadequate when our children continue to need supports and adjustments (it’s even worse when other parents of autistic kids assume that because their offspring can do something yours should too).

Parenting forums and support groups for parents of autistic children are full of parents wanting to push their child’s development and meet typical milestones, desperate to make sure seemingly important developmental steps aren’t missed, keen to set their child on a trajectory towards independence. Once our kids hit their teens there can be a real sense of urgency to prepare them for being independent adults.

Independence is often heralded as the ‘optimal outcome’, but should it be? There is nothing inherently wrong with needing support or relying on other people to help. When wealthy, successful people employ cleaners and gardeners and cooks and drivers it’s seen as a status symbol, yet when disabled people (who might also be wealthy and successful, but far too often are not) employ others to meet daily needs it’s seen as dependence which us parents are led to view as a ‘Very Bad Thing’.

Personally, I think the teen years are tough enough for all kids, so my goal is to make them as easy as possible. Yes, we do need to keep a little corner of an eye on the future, but we also need to relax a bit and go with the ebb and flow as our kids grow up. Hindsight can show us where we laid good foundations in previous years and give us clues about where we need to shore them up for the future.

If parenting is about supporting and preparing our children for the future, whatever that future might be, every now and then it’s worth looking back to see what’s worked (and what hasn’t) and think forward to what might be useful for the future. In my experience, it always helps to hear from parents of similar children who are a few years ahead to help prepare for transitions and potential challenges.

My top 5 tips for parents of younger autistic children to make the teen years easier:

Don’t waste effort on transient skills

If your child doesn’t like playing in the playground or has unusual taste in toys and books, that’s ok. Don’t spend hours and hours encouraging, cajoling or forcing them to do things you think they should be doing so they can ‘fit in’ – there’s a good chance that by the time you’ve ‘succeeded’ their peers will have moved on to something else. It is far more useful for the future to support your child to be confident and happy doing what they enjoy. And it’s quite possible that what was an unusual interest at 7 becomes the foundation of a successful career by 21.

Future proof any routines

One thing I’m sure most parents of autistic kids know is that you can never tell which routines will be resisted, which will be open to change and which ones will become the immovable bedrocks of your child’s life, so it is really worth thinking ahead when setting up and agreeing routines. One of our rigid routines is a daily bath before bed, and now we are in the teen years, I am so glad we kept this routine! Whilst a younger child might accept a routine of bathing or showering on Wednesdays and Sundays, teenagers and young adults will almost certainly need a daily bath or shower.

Don’t force your kid to follow the crowd

I remember when my son was younger, and (seemingly) everyone telling me he would eat better/play better/learn better once he went to nursery/school/clubs. Back then the idea that his life (and ours too if I’m honest) would be easier if he copied his peers and adapted to ‘fit in’ was tempting. But it never happened. Now I’m proud of his stubbornness and immunity to peer pressure. He has found a group of friends where he is valued without having to perform or mask, and I’m hopeful that this will be a protective factor in the future.

Support self-regulation

Something I’ve learned in my work with offending adults is that if children and young people are controlled and shaped through external controls (eg rewards, consequences and punishments) they can fail to develop their own internal controls. I’ve met too many young adults who know their behaviours are destructive but they don’t know how to stop, and it’s a lot harder helping adults learn these skills than the child you have 24/7. We need our children to recognise their own cues (hunger, thirst, tiredness, stress) and learn how to respond to them. We need to help our children develop their own personal problem-solving toolkits. We must empower our children to self-regulate their own lives as much as they can. Self-awareness is vital for our children to become self-advocates.

Respect and encourage bodily autonomy

Don’t force unwanted tickles, hugs, kisses and physical contact onto your children. If they don’t like it you need to stop. Not only might it be causing sensory distress, but it sends a dreadful message about consent. We know that autistic children, teens and adults are more vulnerable to bullying, abuse and exploitation and we must equip them with the ability and confidence to say “No”. We must not teach them to ‘get used to’, ignore or override their discomfort.

If you have any more tips, please leave a comment. I would especially like to hear from autistic young adults and parents of autistic older teens and young adults who might have some tips for me and other parents of teenagers.

*apologies for overuse of ‘quote marks’, they mostly indicate my use of terms that I am not overly keen on but which I accept have a shared meaning.

Autism and interviews

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[image shows the text ‘Performing without a script’ against a background image showing a manual typewriter on a bleached wood plank desktop]

Performing without a script

This week I had an (unsuccessful) interview for a role which I was quite capable of doing and which would have fulfilled a long-held ambition. I am not confident or arrogant enough to have thought I stood a chance against the competition, but I had hoped to demonstrate my capabilities at interview and to come away believing that I had given my best.

Instead, I completely fell apart.

Despite being diagnosed autistic, I still have moments when I wonder if the diagnosis was wrong. After all, I manage to balance the demands of work and family life, I am independent and fairly well educated. I didn’t think I needed much in the way of support and adjustments. But, slowly, I am realising that for me to move forward, out of my carefully constructed safety bubble of the familiar and predictable, I do indeed need support and adjustments. My autism is limiting me and I want to stretch those limits.

In common with many autistic people I have spent hours analysing my performance and trying to work out what went wrong and what I should have done differently. If I had a time machine and could return to the day I was invited to interview, what advice would I give myself? What should I do next time?

Book a hotel room: even though the interview was little more than 20 miles away, terrible weather disrupted my travel plans. I have an appalling sense of direction and getting lost ate up my contingency and last minute preparation and relaxation time. A night away from the responsibilities of work, home and parenting might have helped me get into and establish my role.

Ask about the interview room: and let the interviewers know about any sensory problems. My interview room was very hot and I was distracted throughout by an electronic buzzing noise. A picture of the room would have helped so I knew what to expect.

Ask about the dress code: I would have been more comfortable if I hadn’t tried to smarten up from my usual fairly casual workwear.

Ask for the interview questions to be presented in written as well as verbal form: interviews are stressful for most people, but, as I discovered, for some autistic people (like me!) they can be so anxiety-provoking that processing information and verbal skills are severely impacted. I struggled to both process the questions and formulate coherent responses. Had the questions been written down I would have been able to take my time to read and think before speaking.

Ask for the main questions in advance: it is not unusual for many of us autistic people to struggle with situations where we have not been able to prepare. It is basic autism awareness to limit surprises and prepare as much as possible to enable many autistic children to participate. Autistic children become autistic adults, and our needs for support might change as we get older but they don’t all disappear.

Ask to take notes into the interview: despite copious preparation, I failed to recall any of my prepared responses or themes. None of the interview questions were a surprise, but, coupled with my already hindered processing, and perhaps some literal interpretation, my prepared scripts proved elusive. Some brief notes under potential headings and keywords would have helped jog my memory and provided a framework for my replies.

Ask to meet the panel ahead of time in a more informal setting: I realise that this might be a step too far for some interviewers, but walking into a room of strangers was my tipping point. I struggle to meet new people even at my best (except at work where I am in ‘work role’) so some element of familiarity would have reduced my anxiety. This could also be ameliorated by conducting part of the interview in a non-verbal format, perhaps written questions and responses by email followed up by a face to face interview.

Don’t look at lists of what not to say: it appears that, when under pressure, if my brain is given a choice between ‘what to say in this sort of interview’ and ‘what not to say in this sort of interview’ it will opt for the latter. Next time I will only focus on what I should say.

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The interview panel were very kind, and I have had encouraging feedback about my written application. Next time I will be proactive in asking for adjustments so that I can show that the me in person matches up to the me on paper.