6 Tips on Engaging with my Autistic Son

spoiler alert: see the child before the autism

I’ve experienced an array of reactions when I explain to people that my son’s autistic – and these aren’t just random people; it could be a school mum I speak to or a family friend. Sometimes you can see their faces glaze over and their brains whirring away as they think “what do I say to that?”, “how do I acknowledge what she’s saying without making it look like pity?”, “how do I interact with her son when I have no real idea what autism is?” and there are plenty more captions I could place to the expressions I receive.

The good thing is that – and you’ll see this from the questions – they’re all coming from a place of wanting to understand and be supportive. But sadly, sometimes we get so caught up in the quagmire of what we should and shouldn’t do that often we do nothing. Perhaps that’s from a place of fear; fear of being seen as ignorant; fear of offending someone; fear of accidentally saying something that might make you seem like you’re anti-disabled people – who knows? That’s one for another blog.

But I honestly believe that if people worried less about how something might be perceived and instead, just asked what they were thinking, we’d all understand each other much better instead of constantly trying to interpret what someone’s lack of reaction or muteness might have meant. It’s not only psychologically wearing but we end up creating stories and reaching conclusions in our head about people that simply may not be true. And we’ll remember those stories the next time we see them which will play out in our interaction with them – and so there’s this whole psychological warfare thing going on when people truly only want to be on the same side.

stop wondering

Recently a friend told me her son had muscle tone issues; I’d heard of Duchenne and Muscular Dystrophy but to be honest I still couldn’t tell you much about either condition. So I asked: “sorry, but I don’t really know much about this condition, what is it and how does it affect James on a day to day basis?”.

No-one knows everything and even if you do know some things about certain conditions, unless you ask you won’t know how it affects the child you’re discussing or their parents for that matter. So, stop wondering and just ask. Whenever anyone’s asked me about my son’s autism, I’ve never passed judgement even when they described him as learning disabled or even just referred to him as naughty; at least if people say what they’re thinking it opens the way for me to correct them and explain that he experiences the world differently to you and I or whilst it seems that he’s not listening to me (he generally avoids eye contact when you talk to him so it can look like he’s not paying attention),  in fact, he’s absorbing my instructions and processing them – and he’ll respond after a short delay.

“The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having, along with other issues, persistent and significant difficulties with social interaction and social communication.” National Autistic Society

So, I thought I’d offer some tips for when you meet my son. If you have an autistic child or know one, these may resonate with you. However, equally, because autism is a spectrum condition your reality might be so different to mine that my tips feel alien. Either way, I hope there’s some light which you can glean from these.

tips

#1. No open questions: When you come over and want to play with my son, don’t ask him what he wants to do – open questions like this are overwhelming and he’ll end up opening lots of things and flitting around for an hour trying to find the perfect activity. Instead, boldly suggest something , i.e. shall we do a puzzle together? There are only two possible answers to this which creates less confusion and so in turn, less anxiety which means he’ll be more focused and will engage with you.

#2. Be honest: If you politely say “why don’t you come over for a playdate?” he’ll ask you for the date, time, duration and what he’ll do there. He is very literal so whilst you think you’re being polite and making conversation, he’s actually making plans so be prepared to honour them or just don’t say something you don’t mean. The same applies to the language you use; colloquialisms or phrases only serve to create confusion in the literal minded – I once made the mistake of saying it was “raining cats and dogs” and it utterly petrified him.

#3. Avoid games where there are winners and losers: games such as Snakes and Ladders are kept out of sight and reach in our home because when my son loses, he loses hard – it can be literally devastating for him. In his mind, if he’s lost a game, it’s as if he’s lost at life. Melodramatic, yes. But very much true.

Instead opt for collaborative, team based games such as Articulate, Charades, or Pictionary. With these, I often manipulate the time, giving him 90 seconds instead of 30 because if he has slightly more time, he’ll answer more questions and get to the finish line sooner.  Before I get bashed by the honourable parenting brigade about not teaching my son to be a graceful loser, remember that he requires more support with social integration and interaction than a neurotypical child who gets social cues and the like; mixing with others doesn’t come naturally to my son and he’s much happier in his own company. So if tweaking the timer means he plays with others on a focused goal and can experience being a team player, well that’s what I’m prepared to do. I know this won’t work forever but for now, I can get away with it.

With everything I’ve experienced so far on my autism parenting journey I can say that I’m constantly learning and adapting – there are ‘eureka’ moments when you’ve cracked something but they pass swiftly and are replaced with new situations and challenges. So I’m going to maximise on this one whilst it lasts.

#4. Don’t expect an equal partnership: My son’s dominant in his play with others. He’ll play alongside you if you’re Lego building but not with you – not in an integrated way like children who role play mummies and daddies, engage with each other and jointly enact a situation (i.e. mummy converses with daddy and makes a plan to go to the shops whilst he cooks dinner).

My son requires play to be more structured – no surprises or reactive situations – and the only time this sort of simulation has ever worked is where he plays a restauranteur/chef where you’re the customer and he tells you the menu and what you’ll eat (you can’t choose). He’ll clear the dishes when he’s ready even if you’re mid-sandwich and outstretch his hand for payment of plastic coins. It’s all on his terms. You might get a pudding but it depends on whether he’s in the mood to keep playing or not.

Oh, and you might be required to dress up according to the customer he wishes to serve that day. So, confidently don the top hat, monacle and clip on giraffe’s tail and pretend you’re at an after dark tea party at the zoo.

#5. Cast aside your inhibitions: My son is flamboyant and doesn’t feel nervous about performing in public; in fact, he struggles to identify and label this emotion (and most others). And he thinks that everyone is just like him. He’s an exuberant showman so be prepared to be enlisted into an impromptu show – obviously he’ll be the main event but you’ll get a small role as a (non-speaking) extra and be told what to do. Warning: will probably involve Hawaiian dress up, chorus singing and dancing. 

#6. Don’t be offended: I’m very careful about where I take my son on trips out and which play dates or parties I agree to. The main reason being that if it’s going to be an assault on his senses which may send him into sensory overload, it’s better (for everyone) that I decline. Things like house parties where the kids run ragged and tear the place apart or pottery painting parties are challenging because the former has no structure so he literally doesn’t know what to do with himself nor integrate himself into others’ play and the latter is so structured that one wrong brushstroke can immensely upset him and lead to a meltdown. So if I say ‘no’, understand that I’ve definitely considered your kind invitation but it’s probably not the best environment for him.

just ask

And finally, if you genuinely want to know how he’s coping with life, ask me. If you just enquire “how are things?” or “how are you?” you’re not telling me you’re ready or willing to hear how things really are. We all have our own daily stresses and strife and might not be ready to hear about others’ difficulties – and that’s ok. I know it makes some people uncomfortable talking about autism and it’s fine, you don’t have to. But if you are ok talking about it, then ask me things like “how is he getting on at school?” or “how are you managing with so much going on?” and I promise to give you an honest answer.

If you read these tips back and eliminate the autism lens from it, that is, imagine that I’m just writing about general tips for effective communication with children, you’ll see themes of authenticity, clarity and honesty which are qualities that all children respect and respond to in adults.

Sometimes we see the disability or condition before we see the person behind it and we need to consciously rewire our thinking to stop doing this. Ultimately the call for easier communication with my autistic son is the same call as that for communication with any child; clear, meaningful and engaged dialogue.

Now, please excuse me whilst I don a silver plastic tiara, floral garland and doctor’s coat – I’m required at a piano recital of nursery rhymes interspersed with acrobatics, imminently.

 

Photo Credit: Charamelody via Flickr

 

 

 

“It’s not abuse if he didn’t hit me”

I recently attended a panel discussion where representatives from Women’s Aid and Surviving Economic Abuse [SEA] talked about raising awareness and responding appropriately to economic abuse and coercive control; politically, socially and professionally. SEA have been instrumental in pushing for the concept of financial abuse to be broadened out to include economic abuse – within the overall policy definition of domestic abuse.

The government has responded to this and in January 2019, the draft Domestic Abuse Bill was published aimed at supporting victims and their families and pursuing offenders. The new legislation will specifically include “economic abuse and controlling and manipulative non-physical abuse”. [source: http://www.gov.uk]

what’s financial abuse?

Financial abuse is “a pattern of controlling, threatening and degrading behaviour which restricts a victims’ freedom”. It’s usually experienced alongside other forms of abuse.

“Financial abuse involves a perpetrator using or misusing money which limits and controls their partner’s current and future actions and their freedom of choice. It can include using credit cards without permission, putting contractual obligations in their partner’s name, and gambling with family assets.

Financial abuse can leave women with no money for basic essentials such as food and clothing. It can leave them without access to their own bank accounts, with no access to any independent income and with debts that have been built up by abusive partners set against their names. Even when a survivor has left the home, financial control can still be exerted by the abuser with regard to child maintenance.” [source: http://www.womensaid.org.uk]

and economic abuse?

As well as the above, victims can experience restricted access to things like food, clothing or transport as well as opportunities to upskill themselves. The charity Surviving Economic Abuse [SEA] describes it as:

“Economic abuse is designed to reinforce or create economic instability. In this way it limits women’s choices and ability to access safety. Lack of access to economic resources can result in women staying with abusive men for longer and experiencing more harm as a result.”

relevance to me

Throughout my life, I’ve met many Asian women who are not just compliant but actively and consciously submissive to their husbands out of fear.

They may work but their husbands control the finances and make all key money related decisions.

They sign papers where told without the opportunity to read them or have a conversation about what they’re agreeing to.

They couldn’t tell you whom their mortgage is with or where their savings are kept.

They can go shopping with friends with their husband’s permission – but have no access to funds to buy things for themselves.

Sometimes their husbands aren’t physically violent; never a finger laid on them. But they’re met with spontaneous and erratic verbal vitriol without cause so they never know what to say or when, in case it triggers an explosive response.

Such a woman may not recognise herself as a victim of domestic violence, economic abuse or coercive control – but under the updated legislation, they very much are.

The sad truth is that even if they identify themselves as a victim, for reasons such as keeping the family together, fear of what society will say and a multitude of other shame related explanations, they won’t leave their husbands or speak out for themselves.

We all know such a woman.

In reality, the change in legislation will probably come and go – and they won’t even have heard of it.

We might not be able to help them exit their situation if they don’t want to, but we can be there for them, support them, listen to them, love them.

From attending the forum, hearing about the proposed legislative changes and reflecting on the ladies I’ve met who have experienced different forms of domestic abuse, I was motivated to write this poem:

I Know A Lady

I know a lady…

….who’s afraid to go out in case her husband needs her to do something and she’s not there to comply 

…who’s too embarrassed to speak to the neighbours because they hear her husband shouting and she worries they’re talking in hushed tones about her

…who awaits her instructions each morning as to what meal she is expected to prepare; she can’t volunteer any suggestions

….whose husband is praised by family and friends for his likeable manner but who never utters a word of love or kindness – or even meets the gaze of – his wife

…whose once broad and active social circle has now diminished to passing platitudes on the street because she’s been told not to maintain friendships with “troublemakers” who speak against him

…who is criticised by her husband when she offers to help and accused of deliberately belittling him

…who goes to the supermarket with her husband but isn’t allowed to choose anything

…who didn’t know that there were works starting at her home until she opened the door to the builders one morning

…who has no idea how much her mortgage is or how much money is in the joint bank account

…who relies on money from her children to buy clothes, shoes and food

…who experiences shouting, door slamming and controlling behaviour everyday but will say she’s not an abuse victim because she’s never been hit

…whose inner circle knows the truth about her reality but no-one talks about it

…who experiences physical symptoms of anxiety when she hears his footsteps descending the stairs, afraid of what mood he’ll be in

…who is only allowed to speak when addressed by him directly

…who can’t shake off his influence so even when she’s out, she’s anxious to return home

I knew a lady.

She was incredible.

A reservoir of love – always celebrating your achievements and commiserating your losses.

She’d cook up a feast for 20 in a couple of hours and serve you with the warmest smile.

She gave love in abundance to everyone she met but her heart ached for acknowledgement from her life companion.

She left with a heart full of promise of the places he’d take her and what they might see together.

She longed for the touch of his hand, a softly spoken word or a look of affection. To be included and noticed, to have an opinion that counted.

She had no appetite for material things and she eventually succumbed to emotional starvation.

She believed that God would make it all alright in the end.

Do you know a lady?

what can I do?

If you know of anyone suffering from domestic or economic abuse or is under the control of someone else, please offer to talk about it. You can provide practical support such as referrals to organisations that can help; or take them to a safe place where they can talk and unburden themselves; plan respite trips such as to a meditation class or for a coffee; help them realise their own self-worth by reminding them of what they’ve accomplished; and avoid platitudes such as “everything will be ok, don’t worry” which serves only to tell the victim that you’re uncomfortable talking about the problem.

The reality is that many (especially older) Asian ladies won’t leave their husbands following decades of marriage; they’ve become used to living in an unequal partnership and have grown to be dependent on their abuser husband. And there are many women who simply won’t reach out to organisations offering support because of shame and fear of judgement by the community.

listen

But we can each make a positive difference to the life of someone we know who is a victim of domestic abuse or coercive control. We can offer support and the gift of our time to hear their story.

I was once walking with my two year old son on a cobbled path at night in Africa and concentrating on where I placed my feet so I didn’t fall and take him down with me. He exclaimed “look up mummy!” and I followed his finger to the night sky which was bursting with millions of brightly shining stars. It was utterly magical. I was so consumed by the cracks in the floor that I almost missed the star studded spectacle above my head.

I learnt a valuable lesson that day.

We are one humanity; let’s look up from our lives and see what’s going on around us.

Let’s look after each other.

 

Acknowledgments:

Women’s Aid – https://www.womensaid.org.uk/research-and-publications/dame-project/

Surviving Economic Abuse [SEA] – https://survivingeconomicabuse.org

photo credit: bbc.co.uk

 

Mummy Doesn’t Always Know Best; the Benefit of Coaching in Parenting

Being a mum of an autistic child I’ve learnt to flexibly adapt my plans to suit my eldest’s mood – often it works but sometimes I end up with slapped-palm-to-forehead woe when I’ve missed something blindingly obvious (like taking him to a fancy restaurant sans iPad, toys or any other variation of distraction so his attention becomes naturally focused on the dainty glassware and heavy cutlery).

having a plan for your plan

Over the years, I’ve learnt to make a plan A, B and even a C for most things; from sandwich fillings to activities. For example, my eldest loves climbing (walls, trees, rocks, furniture – if it can carry his weight, he’s climbing it). So, if I’ve agreed to a trip to the local climbing centre, and this can’t take place, it can only be replaced by a trip which achieves the same aim so, perhaps to one of the local parks which has a climbing wall (this still requires significant explanation and evidenced based rationale as to why said plan needs to be amended but if undertaken sensitively can still lead to a positive outcome).

Ultimately, climbing has to happen because that was the verbally binding contract I entered into and there are no exclusion clauses; I’m well and truly committed. Any retraction of my agreement would be a betrayal in his world of the gravest kind and lead to mistrust, anger and heightened anxiety because the ‘plan’ has been changed so critically.

boo!

In practice, this means that spontaneity doesn’t really have much of a place in my home.  An example is when I’ve forgotten an ingredient I need to cook a particular meal and need my eldest to come with me quickly to the supermarket to pick it up. If I am to traverse this path, I need to be prepared for intense questioning as to what exactly I need to buy; how – when knowing I was making this dish – I managed to miss a vital ingredient and why an alternative dish can’t be prepared; accompanied by the qualification that I need to wait for whatever activity he’s engaged in to reach an appropriate point when it can be left (this can be anything from five minutes to twenty) or for the episode of whatever is on Disney Junior or CBBBC to have ended.

One of the classic manifestations of his autism is that there has to be an explanation for everything; nothing just ‘happens’. And trying to fob him off with a half hashed explanation is a false economy; if you omit detail you can bet your last penny that he’ll find the loopholes and put your own argument back to you, creating further explanations (or hole digging in my experience) and inevitable delay.

Not unlike a chief prosecutor intelligently unhinging an unreliable witness.

It goes without saying that the old Indian way of parenting (the one I certainly grew up with) of “just get in the car or else” is a huge no-no because it stokes the fires of anxiety, creates stubbornness, foot stomping/door slamming rage and lots of tears – if we’re in this zone, no-one’s going anywhere and nothing’s going to get cooked anytime soon.

All this for some basil to make a basic pesto. I could probably have ordered and have had my food delivered to me on Uber Eats in the time taken from the initial request to accompany me, to our actual exit from the house.

tipping the scales

One thing that puts my son on high alert emotionally is the prospect of being in an unfamiliar environment with people he doesn’t know. He thrives in familiarity – with everything. He has a visual timetable at school so he knows every activity he’s doing and when his breaks are. He likes knowing the rota for his teacher helpers and when one’s off unexpectedly, it can cause him anxiety and derail his day as his insecurity manifests through outbursts of frustration and anger.

He needs to know any changes to the usual schedule (at home and school) in advance so he feels ready for them; he needs to feel like he’s part of the planning process, not like events are being done to him. Through his beautiful eyes there is no discrimination or hierarchy; everyone’s equal. But this means that he wants to be involved in any decision affecting him; from what he eats to where we holiday.

no surprises

Whereas many neurotypical children love the excitement and anticipation of surprises, for my eldest this is akin to hell. You couldn’t say you’re taking him somewhere but keeping it a surprise without him stressing the whole time as to where he’s going. And until he arrives he’ll guess relentlessly and ask inumerable questions in his quest to know what’s going on.

Knowing things gives him security. It enables him to feel in control and minimises the anxiety that comes with anything unexpected.

His preference for familiarity pervades everything. He loves all foods and will try new varieties of cuisine but if you’re going to change something he likes, you need to tell him beforehand. I once blended spinach into a quiche mix and it turned the whole filling green – he wasn’t impressed and instead of digging in, he spent at least 20 minutes asking for an (adequate) explanation as to why I altered the recipe whilst poking it from various angles to ensure a nether beast wasn’t hiding in the pastry waiting to make an impromptu appearance. Well intended variations from the usual, generally, quickly lead to me being apprehended for my divergence.

So with experience – this is a new journey for me as well as him – I’ve learnt how to make him feel involved and encourage more peer level type coaching discussions rather than trying to flex my parental obedience muscle.

the plan that put all other plans to shame

Recently, feeling smug and content that for once I was ahead of the parenting curve (a rare occurrence), I told him he’d be spending the Easter break at a gymnastics club. I thought this was a foolproof holiday plan. He’d love it because:

  • he went to the gymnastics holiday club last year and loved it;
  • it was the same gymnastics club he frequents every week and he already knows the teachers;
  • his gymnastics training is massively boosting his confidence, flexibility and balance and he’s regularly chosen for demonstrations – which appeals to the showman in him.

However, instead of the awaited ‘thank you’, I was met with a look of pained disappointment and the statement “but I don’t want to go mummy”.

what?!

This was plan A; there was no alternative – I was so sure of plan A’s success that I had flippantly discarded the requirement for a plan B let alone C.

Alarms started going off in my head; I was thinking “but he has to go, there’s no alternative” whilst knowing that there is nothing I can make him do. My part time work means that my annual leave is pro rata’d and quickly consumed by half term holidays, a bit in summer, Christmas and inexorable medical appointments.

I felt that my unpreparedness had completely exposed me as a failed autism mum. If I couldn’t predict what my son wants and likes then no-one could.

I started rapidly scanning options in my head. All the holiday clubs locally would have been booked months ago and the choice of going to just any one isn’t a luxury we can avail ourselves of; I need somewhere that can accommodate his needs and where I can spend at least the first day settling him in and ensuring he’s getting enough one to one attention and is comfortable.

cross examination

But why didn’t he want to go? Like a barrister mentally trying to work out all the possible answers to the question before completing my sentence whilst simultaneously tiptoeing the line between aloofness and incredulity, I asked: “what’s wrong? why don’t you want to go?”. He replied “the place is different, it’s a girl’s school and I won’t know anyone”.

Oh heck – he was right (cue slapped-palm-to-forehead woe again).

Yes, it was the same gymnastics club and teachers but they relocated the holiday club this year to another school ten minutes away. This was a change in his world and I’d not prepared him for it at all. Damage control was needed for sure, but this was still a concern I felt I could reassure him about. I explained that the place was different and on the first day he’d need to learn where the toilets and lunch rooms are but after this, it would all be familiar. He was contemplative – a good sign.

With point two, I explained that usually it was a girls’ school but in the holidays it was for everyone; this explanation created no extreme reactions – another positive.

who’s going?

I explained he’d know other children from the club. “Who?” he asked, his interest peaked and wide eyes expectantly awaiting my reply. I was stumped. I couldn’t say for sure who’d be there; I don’t know any of the children’s names because there’s so little interaction with the parents at the class.

Generally when the children are reunited with their parents, it’s akin to a swarm of ants being released, each running to their respective carers who bustle them up and usher them out of the door whilst their arm is still half way through their jackets. (I’m as guilty of this as anyone, steering him to the car whilst he practices gymnastics moves in the car park, so I can get back to my tired toddler and avoid the looming 10 minute catnap which will recharge him and make sleep elusive for everyone).

To add to my ignorance, some parents elected for the odd gymnastics day and others (like me) put their children in for the whole Easter break. I expected that on a balance of probability someone either from his school or the gymnastics club would be there but I couldn’t specifically say whom or on what days.

‘Probably’ is not an answer my eldest can understand; it’s too uncertain. In his world things are black and white – it’s either happening or it isn’t, it’s guaranteed to be fun or it’ll be as boring as sin.

the failed oracle

In this case his gym buddies would either be there or not and why, as the mummy, do I not have this critical data? In his world, I know everything; I’m the supreme oracle, knower of everything with mental arithmetic abilities akin to Gauss, artistic abilities in the region of Van Gogh and the singing skills of Ava Max (he totally loves her). So on top of being fairly mediocre in these categories at the best of times, today, I didn’t have the answers to his concerns either.

“I don’t want to go” he said. “I’m scared that I won’t know anyone”.

Now what? It was Friday and the Easter break had started. My racing mind (and heart) flitted between “I need a back up plan” to “what other clubs did I know?” to “if I ignore it and wait until Monday, what if he plainly refuses to get ready?” to “I’m expected to be in training at work, how can I negotiate this when I’m perpetually self-conscious about working part-time?”.

In that moment I had a choice about how I was going to react to this situation. I could create a frenzy around me (and within me) or I could see it for what it was – my autistic child who looks to his mummy for security was telling me he was scared and supporting him was my priority.

chop chop

So I cut the negative self talk and told myself “If he goes happily on Monday, great – that’s plan A. If not, we’ll work it out whether that means I stay with him at the club or at home – and everything else will be dealt with once I know he’s ok”. I needed to say this to myself to (a) be ok with the absence of planning involved in this ‘plan’ and (b) acknowledge that I succeed as a mum everyday and not to allow negative self-talk to unhinge me when things haven’t gone the way I’d intended.

With this clarity of mind I told my son I had a proposition. He could counter it if he disagreed with any part of it (as if he needed permission) but he needed to hear it first; this was the peer level coaching in effect.

I had his attention.

I acknowledged that his feelings of nervousness were valid but unless he tried a day he wouldn’t know if he liked it or not. I proposed that he attempt one day – I’d stay with him until he felt comfortable – and if he didn’t like it, he wouldn’t need to go to any more; no questions asked.

It was a successful negotiation which ultimately resulted in him completing two weeks there and even obtaining two grade promotions. But even if it hadn’t played out that way, he’d have still had a happy time with a quickly cobbled scheme essentially consisting of being ferried between my husband and I, his doting grandparents and someone else I could rope in (that he likes) to exhaust the local climbing, soft play, cinema and trampolining facilities.

life’s lessons

I learnt two things from this situation:

(1) my son’s autism makes him so hypersensitive to change that as much as I’d love to plan for every eventuality, this is plain unrealistic. I need to get comfortable with this knowledge because it’s so counter intuitive to my highlighting-Post-it noting-mind mapping-diary managing self;

(2) whenever something purportedly goes wrong with my son, I turn to myself to ask what I did to cause it. And yet when it goes well I don’t credit myself with equivalent speed. Listening to my inner dialogue, cutting it as soon as the ‘blame’ conversation starts and replacing it with the question of what I can learn from the situation has literally saved me from self destruction.

Steve Chandler insightfully says “Only two things can result from having expectations. One: the other person will not meet your expectation and you’ll be disappointed (or even betrayed). Or, two: they will meet your expectation, and because you expected it, you won’t feel anything, because, after all, it was what you expected. So your states of feeling will either be Disappointed or Nothing” – Crazy Good.

So the me of today is planning not to over plan and not to hold expectations of others – including my son.

I should probably do a quick mind map to make sure I’ve explored the remit and ramifications of my new plan…

Photo by Annie Spratt on Unsplash