Taboo Topics – 6.1 Parenting Solutions

OK, yes, I agree that my previous post on parenting problems was somewhat lacking in substance.

Firstly, I failed to explain that my topic was solely on the difficulties of being an autistic parent. Not an “autism parent” (parent of a child with autism), but a parent who is on the spectrum themselves. The post was not intended to address any of the complexities around raising autistic children.

Secondly, while I listed some typical autistic traits which can make parenting difficult, I failed to propose any solutions. Which, I have to agree, makes the post somewhat lacking for any fellow AS parent looking for tips, or for family and friends looking to offer support.

So let’s go a bit further.

Talking about the ways in which autism can adversely affect parenting still seems very dangerous, so I’m feeling the need to repeat myself here. Every parent in the world has issues that affect their parenting, whether they have ASD or OCD, NPD or PTSD, or are just plain immature. If you dare use my post to suggest that autism, of itself, prevents a person from being a good parent, I will personally come round and tie up your cat’s whiskers and kidnap your flowers, comprende?

Right, now I’ve got that out the way (removed my 1920s fedora, stubbed out my cuban cigar, and brushed off my lapels), here are some ideas on parenting strategies for those with AS:

Strategy 1: Enlist Partner Support

If you are lucky enough to have a supportive partner, enlist their help. Work out (for each of you) your parenting strengths and weaknesses – or list the parenting activities you enjoy, dislike, and absolutely can’t stand. Distribute tasks in a way that maximises enjoyment and minimises pain for you both, as far as you can.

That may mean some unconventional approaches, such as an NT (neurotypical) father arranging playdates instead of the autistic mother. It could mean an NT mother taking on spontaneous activities such as outings while the autistic father looks after those that can be regularly scheduled, such as meals and bedtime routines. The important thing is to go with whatever works for yourselves and the kids, rather than sticking with conventional gender roles.

It’s important to regularly check with your partner that they remain happy with your arrangement. The reality is that the NT partner, without personal experience of AS, may not appreciate the necessity of the support they are being asked to provide, which may be more (or different) than they had anticipated going into the relationship. They can start to feel unappreciated and resentful. So the autistic partner needs to be proactive in asking how their partner is going and being willing to negotiate changes to the arrangements.

On the other hand, where the NT partner refuses to provide the requested support or chooses to stick within the defined roles they may be more accustomed to, the autistic parent needs to be vocal on the level of difficulty they are facing because of their AS. There must be understanding that an autistic parent forced into performing according to normal NT standards without support is risking a burn-out or breakdown.

Strategy 2: Enlist External Support

This is what you will need to do if you don’t have a partner or s/he is not sufficiently supportive. I can’t say much about enlisting external support as personally I’m particularly inept at obtaining such and have typically muddled along without.

What I will say is that for an autistic person it is crucial that any support is regular and consistent rather than chaotic with respect to type, timing or duration. This means that it may need to be provided either by close family members who have sufficient time and motivation (such as retired grandparents), or by paid arrangement with a service provider. Many types of informal supports fall down through being of an ad-hoc nature which is insufficiently reliable, or through reliance on friendships or social networks, which an autistic may struggle to maintain.

If a parent is self-diagnosed and in need of external support, I do believe it is worthwhile seeking a diagnosis if that might improve access to formal assistance. However, do not disclose your autism to those involved in child welfare. There is too much scope to mistake your need for support as a parenting problem which might endanger the kids.

Strategy 3: Keep Trying (the power of persistence)!

Parenting is all about learning on the job – so it’s important to see oneself as capable of improvement. That doesn’t mean struggling to overcome autistic limitations and become neurotypical – because it’s impossible to overcome a neurological difference. “Improvement” means learning work-arounds and compensation strategies. Don’t try to break past your limitations; sneak around them while they’re looking the other way.

So whatever the parenting issue, keep trying strategies until you find ones that work. In fact, employing strategies to get around your AS in other aspects of life can also be a blessing by freeing up your energy to attend to your kids. What I mean is things like:

  • setting reminders and alarms to help you leave work on time and transition from work tasks to home tasks, or from housework to child care
  • have a written or visual schedule of childcare tasks to keep on track
  • sort out a system for keeping track of finances and paying bills on time with minimum fuss
  • streamline shopping trips to get as much in one go as possible, or shop online
  • if you’re struggling to understand the emotional needs of your kids, try to regularly ask them how they feel or get them to use emotion cue cards
  • indulge obsessions while the kids indulge theirs – read a favourite book or podcast at their athletics class. Or better still, encourage them to share your own interests so you can indulge them together
  • become comfortable with the kids’ social lives by setting rules over activities and durations and loosening these up over time as you gain confidence
  • as the kids get old enough to understand AS, be honest about your difficulties and enlist their support. They will come to appreciate the benefits of a less frazzled parent

Frankly, for any parent with AS, there are going to be times when you are too overwhelmed to do the right thing. There may be meltdowns or shutdowns when you yell at the kids or shut them out. Crushingly, there may be times when you have to deny the kid something important to them, because your limitations do not allow you to provide it. That is the nature of AS.

When it happens, don’t beat yourself up about it. nobody can be a perfect parent, or even a good parent, 100% of the time. And kids are resilient, as long as they know they are loved. Just look back afterwards and try to understand what went wrong and learn from it. Might there have been a work-around? What could you have done differently? Could you have enlisted help?

Ultimately, you need to give yourself a break – and recognise that it’s not easy being a parent with AS. As long as you have your kids’ needs at heart, you’re doing great. Just keep trying.

Taboo Topics – 6. Parenting Problems

I think I’ve procrastinated enough over this one and need to just write something…

This topic is more of a taboo than most – it’s rare for someone on the spectrum to admit to difficulties in the area of parenting. Sometimes that’s from lack of self-awareness (i.e. seeing oneself as a good parent no matter what). Often I believe it is from fear of being labelled a “bad parent”. It’s all very well being open about how one’s autism affects oneself as an individual, but so much harder to be open about how it affects one’s kids.

I’m hoping that what readers have taken from my previous taboo topics was not that autistic people have empathy deficits, that we struggle in relationships, become obsessive about our interests, tend to get fired from our jobs, and may be genderqueer. I’m hoping that the take-aways were more along these lines:

  • autistics typically have deep compassion for others, even if it doesn’t always show in our words or behaviour
  • we can maintain romantic relationships through mutual understanding of each other’s differences and needs
  • our obsessiveness, if channelled appropriately, can be a power for good in society
  • we will typically work our butts off for an employer who is accepting of our differences and willing to provide targeted support
  • unconventional gender presentation is only a problem as far as society believes it to be

My fear is that readers might come away from my posts remembering the negatives and not the positives. However well one tries to explain, this can happen. You can see it in the way the autistic deficit in cognitive empathy has morphed into a common misconception among the public that autistics “have no feelings for others”.

My fear is of the potential for discussion of parenting difficulties to morph into a sense of “autistics make bad parents”. I certainly do not wish to infer any justification for people in authority to use the fact of a person’s autism diagnosis to query whether they should be allowed to have children in the first place, and even whether their kids should be removed from their care.

So when I mention difficulties an autistic person might have with parenting I’m relying on you, my kind reader, not to jump to negative conclusions. Please read to the end of the post!

After all that, I have to admit that many autistic traits, even of the mild Asperger type, can be troublesome when it comes to parenting. Here are a few examples (but note that not every autistic will have all these issues):

  • sensory sensitivities to noise and smells (which may be triggered while looking after babies, for example)
  • difficulties in networking with other parents and finding social support
  • difficulties understanding and providing for the emotional needs of a child, particularly if the child is not autistic themselves
  • discomfort with providing for the social needs of a child, for instance, allowing friends over
  • conflict between the need to spend time with the children versus the need to attend to personal interests/obsessions
  • over-reliance of the parent on the child, as the social communicative abilities of the neurotypical teenager comes to exceed those of the autistic parent

So yes, there are challenges associated with being a parent on the autism spectrum. What I wish to stress is (and I think any parent would agree), there are challenges to being a parent full stop, whoever you are and whatever your neurological makeup.

If we were to look at conditions amongst the population with potential to lead to “bad parenting” what might we think of? Autism, yes. But what about physical disabilities which limit strength and mobility? What about mental health conditions such as schizophrenia or PTSD? Personality disorders such as narcissism and sociopathy? Would we count single mothers? Lower socio-economic status and poverty can certainly play a role, but so can high socio-economic status if it results in arrogance and entitlement.

So basically, if we were to search for people with the potential to be bad parents, we might be looking at the entirety of humanity.

I hope you get what I’m saying. Parenting is challenging for everybody, in one way or another. It is entirely dependant on the individual whether they can work out positive ways to rise to that challenge, within their ability. Some can and some can’t. Why assume that autistics are incapable of recognising and working around their difficulties, or in seeking support if necessary? Autistics can make good parents or bad parents (or more likely, land somewhere in between), just like anybody else.

One more thing before I sign off. Have you heard of the “double empathy theory”? In recent years there’s been research carried out studying the interactions between neurotypicals (NTs) and autistics and between autistics themselves. To paraphrase the findings, it was noted that NTs and autistics tend to misunderstand one another. However, autistics in general had a better understanding of other autistics than the NTs did. In other words, the cognitive empathy deficit goes both ways. It is not just autistics failing to understand NTs, but NTs failing to understand autistics.

What this illustrates is that the discourse on autism has historically been based on negative traits, observed and assessed from a majority NT viewpoint. It is only recently that people have started looking from the autistics point of view. What they discover is that many of these so-called negative traits seem perfectly normal and acceptable to the autist. To us, it may be the NT behaviours which appear insensitive and lacking in understanding and compassion.

I would suggest looking at autistic parenting in the same way. Traditionally, it is the NT majority who have come to a concensus on what type of parental behaviour is good or bad. Yet autistics are frequently appalled – utterly apalled – at the way autistic kids are treated by NT parents and people in authority.

[That was a meltdown not a tantrum – can’t you see the child is not misbehaving, they are overloaded and have no control. They need a quiet safe space to be left alone. What do you expect to happen when you yell at someone in a sensory meltdown? Or yank the arms of someone who is sensitive to touch? Why do you punish a child for behaviour that is out of their control? Have you no empathy at all?]

In other words, perhaps it is autistic parents who should be the authorities on how best to parent an autistic child. In this case, it is worth considering whether an autistic parenting style which seems different, or even wrong according to conventional wisdom, may be just what is needed.

That’s all I wanted to say – over to you.

Taboo Topics – 5. Gender Identity

Yeah I know I’m rushing through this set of posts. For some reason I feel like time is running out to get these down, not sure why. Maybe I just need to get some things off my chest quickly and move on.

So I hadn’t planned this one at all (I’m actually procrastinating over my planned post on parenting) but I was reading something about the link between autism and diverse gender identities and I thought: why not?

I know gender identity is hardly a taboo topic, in fact it seems to be a common point of discussion nowadays, but it’s not something I’ve ever talked or written about before. So it feels like I’m breaking a taboo, at least on a personal level. And I have the feeling people meeting me perhaps wonder exactly where I sit on the whole LGBTQI+etc spectrum, so now you get to find out.

So, I’ve heard that quite a few spectrumites, like me, feel that their autism has affected their gender identity. There’s even a word for it: autigender. Having said that, the exact way in which autigender presents itself can be anywhere under the sexuality-gender-matrix, so please don’t think that my experience covers those of others. This post is unashamedly all about me!

So… where to start?

Well, I suppose as a child/teenager, gender identity issues were not on my radar. Back then, society was only just starting to admit that homosexuals were, you know, humans too. And transgender wasn’t a thing. I was probably about 16 when I went to see The Rocky Horror Picture Show and discovered the meaning of the word transvestite. So yeah, I was quite an innocent in that way.

It’s kind of funny, actually, because in my teens it was probably obvious that I was not exactly 100% gender conforming. I had short hair and wore jeans and T-shirts instead of dresses (actually I still do). I used to get mistaken for a lesbian sometimes, which was ironic because I was actually a little bit homophobic back then. Not in a hateful way, just out of ignorance – fear of the unknown. I like to think I’m more accepting nowadays.

I believe what was going on with me was just the way my brain was developing, because of AS. Other teenage girls grew out of adventure stories and started reading Jane Austen and Charlotte Bronte – they were learning the social nuances associated with an adult female identity. I moved to spy thrillers and sci fi novels, which were just other kinds of adventure story, and I was quite happy picturing myself in the role of the hero (whether male or female). It’s like I got stuck in a prolonged pre-teen gender ambiguity.

As I entered adulthood, this did not bother me or cause me much grief. It was not that I was suffering gender dysphoria and felt myself to be male; I knew myself to be female. It was more that my systemising Asperger brain was directing me towards the study of science and engineering and other pursuits that were traditionally considered within the male domain. Plus I never did get the hang of women’s clothes – they come in way too much variety, and all with a severe lack of pockets.

It was only quite recently that I seriously wondered if I might be transgender. I’d written a novel called The Empathy Key, in which a transgender cyborg struggles with the loss of her/his humanity, which on reflection was quite clearly a cry out from my subconscious for clarity in relation to my own identity – with respect to both neurology and gender. I also read the memoir “Danger Music” by the inspiring Eddie (formerly Emma) Ayres.

So I experimented a bit with wearing more overtly men’s clothes to see how I felt – and while I quite enjoyed that, the result was that no, I was not transgender. Not only did I feel no intense, driving need to take on a permanent male identity, but I felt that too much of myself had been formed from the experience of living in a female body to make such a radical change.

My view might have been different, though, if I’d still been a teenager, struggling to understand why I was so different from the other girls.

And that makes me wonder: is this happening with modern autistic teenagers? In some cases, could autigender be getting confused with transgender?

What I’m going to say here is hugely controversial, and I concede that I’m only looking at things from my own point of view, without having experienced significant body dysphoria, so I may be out of touch with the experiences of transgender folk. But I feel like we ought to be allowed at least to express an opinion in the spirit of open discussion. So here it is…

It concerns me that in the current zeitgeist, kids who are querying their gender identity are so readily presented with the possibility of changing biological sex by hormones and surgical procedures. It seems such a radical and permanent approach, and I worry that they may not have been provided with genuine alternatives. I wonder if some of them might be spared surgery and come to peace with their gender instead through the concept of the non-binary.

Could we not dispense with the black-and-white concept that if one does not feel female, one must therefore be male?

Maybe as a society we need to move away from dividing ourselves into those two distinct categories. Could we not be accepting of a biological female who wishes to dress and act in the manner of a male? Could we not learn to be OK with a biological male dressing as a female and joining in activities with the girls (as far as it is fair and safe to do so)? Or with someone who seems male on one day and female the next? Maybe, if we had better acceptance of non-binary genders within society, there would be less need for surgical and hormonal interventions.

So hopefully, in addition to giving you food for thought, the above explains my gender identity. Yes, I do believe I’ve just followed the prevailing trend and come out as somewhere in the range of the non-binary.

Just don’t start calling me “they”, as I have no inclination to join in the whole “don’t mis-gender me” thing. “She” is fine and, if you like, “he” is fine. Or in other words, I stand with Eddie Izzard.

Taboo Topics – 4.1. The Real Workplace Woes

OK I admit it, my last post was a cop-out. I’d promised something on difficulties with workplace relationships, but then posted something with no mention of relationships at all. I chickened out.

Let’s dig deeper and try again, shall we?

See, this is the real reason I’ve got workplace issues listed as a taboo topic. Not because people with AS have difficulties at work per se, but because we don’t like to delve into the primary reason for that, which is that we struggle relationships – of any kind: romantic, platonic, work colleagues, bosses, whatever. Most of us have an accumulation of embarrassing, humiliating, painful incidents in our working lives that we simply do not wish to be aired.

A special mention here to Michelle Vines, author of “Aspergers on the Inside”, which I would recommend reading if you want to know more on this topic. Michelle is a highly intelligent, degree-qualified engineer who nevertheless has found herself unable to work due to her Aspergers – as her memoir openly and honestly explains.

Many with AS continually get into trouble in the workplace but don’t have enough self-awareness even to know what they’ve done wrong. A quote I saw on another website summarised it well: “they get fired all the time, and they have no idea why.”

I think it’s important that I write this additional post, because I have more self-awareness than many. Generally speaking, I do know why. In some cases, I’ve even worked out how to avoid the adverse consequences of being on the spectrum – I have techniques that other autists and their employers need to know. So let’s break it down.

A. The Cultural Norms of the Workplace are Different

A young adult with AS will have learnt how one is supposed to behave in the home or the school setting. But the workplace is different; there’s a whole new set of expectations to be learnt – and autistics are not good at picking up on social expectations and unwritten rules. Without guidance, of course they will cross boundaries. They may seem to be disrespectful of the boss by treating him/her as an equal, they may overshare personal matters, or they might be too afraid if appearing stupid to ask for clarification or help.

So the first thing for an employer to be aware of is the need to explicitly tell the autistic employee the expectations of workplace behaviour. S/he needs to know very clearly the organisational structure (formal and informal). Rules should be laid down as to things like working hours, overtime, when it may be appropriate to take sick leave and how to ask for it. They need to know the unwritten rules, too, such as appropriate work attire and standards of personal cleanliness, how to respond to a work email or answer the phone in a professional manner, when it is OK to disturb the boss, and any inappropriate topics of conversation with colleagues.

This is the main reason why an internal mentor is invaluable to help the autist find their feet, for at least the first 6 months. They will need someone to explain the rules and expectations, to provide direct and honest feedback when they get things wrong, and to provide reassurance that they are doing OK and with time and persistence will start getting things right.

B. The Most Serious Work Problems Arise from Relationship Issues

I said I copped out, didn’t I? There I was explaining my personal strategies to improve communication and organisation, when these are not the biggest workplace problems at all. The serious problems – the ones that lead to performance scrutiny and potentially getting fired – typically arise from poor relationships.

The fact is, if bosses and colleagues get along with us well, they will deal with our mistakes and poor performance by offering support and training. If they decide they don’t like us, the smallest mistake will lead to punitive actions. That is the nature of humans. It’s not about technical performance of the work, it’s all about whether or not we are seen as a member of their circle, “one of us” rather than “one of them”.

Fortunately, it’s not impossible to develop good relations with work colleagues, provided they are understanding people. I discovered early in my career some simple techniques that go a long way. (To NTs these will probably seem laughably basic, but trust me, none are automatic or easy for people with AS). I’m talking about things like:

  • Remember to greet colleagues in the morning and, if it’s Monday, asking if they had a good weekend.
  • Smile.
  • Eat lunch with them and join them for a beer if invited.
  • Smile some more.
  • Laugh at their jokes. Laugh even if you don’t get the joke.
  • Don’t be prickly – laugh at yourself if they tease you. Assume they mean well.
  • If they share personal problems, don’t jump in and tell them how to fix them, or tell them what you would do, just be sympathetic. Try to understand how they are feeling. Ask if there’s anything you can do to help.
  • Try reading books or watching podcasts on how to be social and connect with people. You never know, some of it might stick.

C. If the Environment is Toxic, the only Solution May be to Leave but Be Smart About It

I said above, it’s not impossible to develop good relations with work colleagues, provided they are understanding people. Unfortunately, that is not always the case. There are certain people (often ones with deep insecurities of their own) who will make life miserable for an autistic.

There are so many ways it happens. It could be that a colleague feels threatened by your technical abilities. It could be a closet narcissist who can’t handle your ability to see through their bullshit, or your unwillingness to compromise your principles to serve their desire for power or recognition. It could be the passive-aggressive boss who acts friendly to you face but puts you down behind your back. Oh, I could go on, but let’s leave it there; you know what I mean.

Usually, these people are far better able to play the system than we are. They know how to get the sympathy of others and cast us as the problem. If it comes to direct conflict, unless we have solid support from their boss, I believe we are unlikely to prevail.

This is only my take on it and others may disagree, but I believe the best course of action is to leave. Toxic environments create so much trauma for an autistic that it’s not worth it.

The important point is to ensure you leave on your own terms, when you are ready. That means being on the lookout for other work opportunities and grabbing anything that comes up. Try to keep your head down and avoid conflict until you’ve got other work lined up. By all means, tell the boss and the HR manager how much grief this person has been giving you, but tell them in your resignation letter.

Many would see that approach as being weak, I expect, but it’s based on a lifetime of experience with not having my opinion heard and understood. I think it’s better to leave than to be chewed up and spat out by the ceaseless cogs of a toxic workplace.

Oh…

I didn’t mean to end this post on such a negative note!

But hopefully my thoughts on workplace relationships were enlightening, if not entirely positive? And please stick around, I have another Asperger taboo topic coming. Catch you later.

Taboo Topics – 4. Workplace Woes

It’s no secret that many autistics have a hard time getting a job. A lot of that is in the way we present ourselves in our CV and in person at interviews.

I’m not going to talk about job searching or interview techniques though, as awareness is increasing of autistic issues in those regards. A welcome trend has started with companies in the IT and finance sectors becoming aware of the untapped pool of talent out there and deliberately targeting neurodiverse candidates. Some are changing their recruitment methods to enable people with AS to demonstrate their skills practically without going through a formal interview at all.

That’s great progress, no doubt about it, and I hope it expands to companies in other sectors also. But my concern today is on what happens after recruitment – that is, the specific difficulties people with AS may have in the workplace, which can lead to them losing or having to quit their job. It is the challenge of not just getting a job, but keeping it.

This one is not a taboo topic amongst those with AS – we all know the difficulties we face – but it is a hard thing to talk about with neurotypical folks. Most of us have experienced trying to verbalise to someone our difficulties in the workplace only to be met with remarks such as “I feel like that sometimes”, “it’s the same for everyone”, or “don’t be so precious”. Basically, we are gaslit (or gaslighted?) into believing that our workplace difficulties are no worse than anyone else’s and we ought to just suck it up.

Nope. Those responses demonstrate a damaging lack of awareness, plain and simple, and that needs to change.

I’m not saying that neurotypicals don’t have workplace woes as well – in fact they may experience the same issues on occasion (which is why we get those types of responses). The problem is that the number and frequency of issues faced by the autistic person is often greater, and the ability to regulate the associated stress response is typically lower.

That last point might need a little explanation. So, studies have actually measured differences in autistics’ brain areas such as the amygdala (which is responsible for identifying threats) and cortisol levels (which enable appropriate physiological reactions to threats). Sensory input may be heightened and stress levels less regulated, so that in certain environments or situations we will be prone to overload, leading to meltdowns or shutdowns. If we try to “suck it up” and remain in such a work environment long term, it leads to autistic burn-out. So that approach is counter-productive as we’ll end up off work in any case.

So what would be a better approach?

We need employers to stop putting all the onus onto the autistic person to “learn to fit into” the work environment. I’m not saying we shouldn’t try our best – autistics can certainly develop and employ workarounds and compensatory strategies – but we need employers to meet us halfway. That means recognising that people with AS, however well qualified or intelligent, have hard-wired differences which we are not able to turn off like a switch however much we would like to “fit in”.

In fact, what I’m asking for is no more than the legal requirement to make reasonable adjustments for persons with a disability. It only becomes a problem when, for example, Asperger-type autism is not recognised by the employer as a genuine disability, or when they fear the adjustments would be unfair to others or too onerous. Unfortunately, these employers will never get to see the true value of their AS staff and the contribution they could make under optimum conditions.

So let’s look at what a sample person on the spectrum (me) actually needs in order to stay in work long term, as an example. Obviously, we are all different and have different issues requiring different adjustments – but if I were to go through all the permutations I’d end up writing a book. A few of these are formal employer adjustments but most are just my personal strategies that I’ve developed over the years:

1. It is crucially important to choose the right kind of work. My heart goes out to those autistics who end up in high pressure customer-facing roles (many retail and service industries, call centres and the like), or in noisy and hectic environments, to which most of us would be completely unsuited. For myself, engineering was a good choice. My current role is particularly autism-friendly, involving self-directed individual work of a technical nature, in a quiet office or sometimes out in the field.

2. If your autism is not obvious, I would recommend working for a while before disclosing. The reason for this is that there is a lot of ignorance and stigma out there, and some may conflate AS with intellectual disability and treat you accordingly. By waiting, the employer gets to see what you can do, and you get to see all the areas which are going to cause difficulties. I believe the best time to disclose is once you’ve worked out what adjustments you need to be able to do the job.

3. Work around any communication deficits to minimise misunderstandings. For example, I do better with written than verbal communications, and better in person than on the phone. Fortunately, as I work remote from the rest of my unit, email is generally acceptable, but I’ve learnt that some types of message should not be sent cold in an email but require a phone call first, so one has to be careful. I always include greetings in the email. If I have to make a call, it helps to have thought about what to say (and in what tone) in advance. When receiving verbal communications I always repeat them back to check I haven’t misunderstood, and I write them down immediately so as not to forget (often I send an email confirmation also). If I miss what people are saying I just apologise (maybe saying I zoned out for a moment), and ask them to repeat it. Even if it makes you feel stupid, it’s always better to seek clarification than to make assumptions about what people mean.

4. I absolutely must have a ‘to do’ list to keep myself on track. This is not only a list of things to do but includes priority order and deadlines. I find I need to take a moment to properly think through priorities – it’s important not to just do tasks in the order they arrive but to make sure you can meet deadlines at least for the most important tasks – and give the boss a heads-up if you can’t or will need help. The list gets amended and updated as work gets finished and other work comes in. Just a pen and paper list works best for me, though I use an electronic calendar a lot too, including setting reminders for meetings which otherwise I’m likely to forget.

5. If possible, find someone who can act as your mentor or go-to person for workplace queries or issues. Ideally this would be someone who could also act as your advocate / protector in case of misunderstandings or clashes with colleagues. This may need to be by an informal arrangement – in my experience it can be hard to get this as a formal adjustment as the employer is wary of asking anyone internally to take on such a role, being outside of their normal job description.

6. Be aware of your anxiety and stress levels and take care of your mental health. I’ve had issues with some kind of anxiety or stress disorder the last few years, but was able to arrange an extra day off every fortnight, which helps give me time to decompress. It’s very common for autistics to need reduced working hours, so I would say don’t be afraid to ask if that would help prevent mental health issues. Other ways I regulate stress is by listening to music through my phone (if feasible) and going outside to walk around the block. Unfortunately, unlike the reduced working hours these strategies are not formal adjustments, so there’s no guarantee of being able to employ them as needed. Employers can be wary of making any formal agreements for anything looking like “special treatment” to other employees. They seem to find it easier to accept time off work as sick leave due to spiralling to a meltdown than taking a little unapproved time to prevent the meltdown in the first place. Whatever.

7. It’s important to join in with social activities as far as one is able, however being careful to keep one’s comments and behaviour appropriate to a work setting. This may well be the area where disclosure of autism is most useful, as without awareness of the condition it is too easy for people to mistake one’s intent and get a bad impression of you. Unfortunately, people will be less likely to view you as a key member of the team if you limit yourself to work communications and don’t socialise, while if you socialise inappropriately you may be seen as an insensitive idiot, but with selective disclosure to sympathetic colleagues there can be hope at least for some understanding.

Apologies for the long post but hopefully I got the main points there. I’m hoping that if any potential employer of autistic staff reads this it will give an idea of what kind of workplace strategies can help to keep us happy, healthy and motivated!

Taboo Topics – 3. Inappropriate Obsessions

I confess, I’m starting to lose motivation for this series of posts. (What on earth did I hope to achieve by airing all the worst Asperger faults in public??) But hey, I feel committed now, so might as well see this through. I only hope people find it informative or enlightening.

And what a gnarly one I have for us today! Trying to work out how to approach this one is giving me a fine challenge to start the new year.

Firstly, this one needs a really big disclaimer at the start, which is: please do not assume that all autistics indulge in the types and degrees of behaviours I’m going to be mentioning, we are all different. And in particular, please understand that spectrumites in general have no less moral sensibility than the general population. So, with that out of the way…

Topic 3: Inappropriate Obsessions

You’ve probably heard that autistics have their “special interest”. I dislike that term. For one thing, some of us Asperger-types do not stick with a single “special” interest throughout our lives, but shift from one interest to another much like anyone else. For another, and I’m going to step straight into the minefield of public opinion here, I maintain that they are not just interests but (to varying degree) obsessions. The truth is, we don’t have “special interests”, we have autistic obsessions.

What I hope to achieve here is understanding that, despite my using the term “obsessions”, these are not necessarily something to be hidden away or feared. Once again, understanding is the first step towards acceptance.

So why do we develop obsessions? It’s related to the way autistic brains are wired – and the way we cluster over at the “sytemising” rather than the “empathising” side of the E-S field. Our brains are, by nature, constantly working to understand the nature of the things around us by seeking patterns and categorising. The way we learn things is from the bottom up – gathering all the data and seeing if it clusters in ways which allow us to draw conclusions.

Take the stereotype of the child who will sit for extended periods reading the telephone directory. OK, yes, it seems weird. But consider all the connections a telephone book opens up to a brain at a certain level of development. The child may come away from their study that having learnt how to sort words into alphabetical order. They may now know the names of all the suburbs in their area, including their locations and postcodes. They may have started categorising surnames into the common and uncommon, into standard spelling and alternative spellings. Would it not be fascinating, to learn all this for the first time?

I believe what happens is that every time we make a connection between one piece of data and another, our brain neurones fire up in excitement. We get a dopamine hit. This is what keeps the child’s head buried in the telephone directory – it is almost an addiction.

Can you see why autistics have a tendency to get hooked on train timetables and route maps?

In the past, females tended to be overlooked for diagnosis because our interests were less “out there” – animals, maybe, or novels. Never mind that the girl has been learning the colours, weights and temperament of every breed of dog, or has been storing in memory the behaviour and dialogue of fictional characters to help make sense of the real world.

I’m not saying this method of learning is limited to autistics, but I think the autistic brain tends towards a stronger craving for it. Many of us can drop easily into a state of hyper-focus. This is a bit like the concept of “flow” – being so completely absorbed in an activity that one is aware of nothing else. From personal experience, I would even postulate that we cannot maintain our mental health without regular ‘fixes’ of our obsessions.

Problems arise when we develop an obsession which is inappropriate in type and/or intensity. It is very common, for example, for a young adult to get into trouble at work for spending too much company time indulging an obsessive interest. This could be enough to lose them their job.

There can be legal consequences of inappropriate obsessions also. There’ve been famous cases of transport-obsessed autistics stealing trucks or trains out of their need to indulge their interest. (For an example, check out a guy called Darius McCollum). Unfortunately, it is quite common to develop an obsessive interest in a particular person. Combined with autistic social and empathy deficits, this can lead to stalking and harassing behaviours (though often with no intent to harm).

You can see why this is a taboo topic. There is a very real, and probably justified, fear that to admit the existence of autistic obsessions would be to paint us all as undesirables and potential criminals.

What I would point out is the flip side of obsessions. The classic example would be Albert Einstein. However gifted he was at maths, would he have developed the general theory of relativity without a hefty dose of autistic single-minded focus? What about Greta Thunberg? Do you think she would have achieved global recognition without an autistic degree of obsession over climate damage?

What I’m saying is that autistic obsessiveness, of itself, is neither good nor bad. It acts a mental driver, pushing a person to a deeper and more intense level of application to whatever has grabbed their interest – whether that is higher mathematics or the novels of Jane Austen or the history of the diesel locomotive.

This is a power, a gift to society, if only people had the wisdom to see and harness it. The challenge is only in the recognition of autistic obsessions when they occur, and the steering of them in positive directions.

My sad conclusion is that society still has a long way to go. Maybe we’ll be getting somewhere when the rail companies and legal authorities decide not to lock up the would-be train drivers turned thieves like Darius, but to employ them instead.

Taboo Topics – 2. Relationship Troubles

I’m going to crack on with my expose of Asperger issues (before I lose my nerve. And because it’s raining roos and emus here so there’s not a lot else to do…)

The same caveats apply as in my previous post – even when I’m generalising, I can’t speak for all those on the spectrum, and many will have different issues and alternative viewpoints to mine. This is just my take based on my own experience, readings about autism online and in autism forum posts. Here we go…

Topic 2. Relationship Troubles

I’m going to limit this discussion to close personal relationships, here – romantic partners and spouses. Even so, this is a big and complex topic, it’s hard to know where to start or how to do it justice. Let’s just say that (a) most autistics desire close relationships as much as anyone else; and (b) multiple autistic traits act together to make initiating and maintaining relationships far more difficult than it ought to be.

Oh, I have to be careful here, this topic is so sensitive. There are websites and books out there written by ex-partners of (often undiagnosed, inferred) aspies with the sole purpose of exposing the reasons why we make terrible partners. And WE HATE THEM. They misunderstand our motivations, they conflate our behaviours with those of narcissists and sociopaths, and the message is always the same – run a mile!

The usual response from autists (after we recover from the meltdown) is to stress that many of us can and do maintain close personal relationships. Which is the truth.

[Some figures here, in case you are interested, from a poll on autism forum Wrong Planet asking about the relationship status of mature adults. Of 130 respondents, 34% were single but only 16% expected to remain so. 40% were currently in a relationship (though for 6% either themselves or their partner were not happy with it). 19% were separated or divorced. So the stats, while a little skewed, are not as dire as those sites would have you believe.]

Such sites are dismissed as spreading hate speech and some lobby to get them shut down… but they remain. As I see it, they are likely to remain in place until we autists are sufficiently well understood by wider society that such misrepresentations are exposed for what they are.

Simply stressing that autists can and do maintain relationships is not enough. It’s the truth, but it’s not the whole truth. The fact is, autism can make relationships harder and if we are to fully accepted, people need to know why and how and what can be done to help. If we are not to remain misunderstood, we have to be willing dive into these frigid, turbid waters and examine the truth of our relationship troubles.

So, here is a list, off the top of my head, of some of the various autistic traits which muck up relationships for us :

  • social skills deficits which reduce the likelihood of meeting someone and making a good impression
  • difficulties in initiating and maintaining a conversation
  • empathy deficits as per my previous post, which makes us seem less connected and emotionally supportive to our partner
  • ability to be attentive in the short term, but unable to sustain the effort required in a long-term relationship
  • alexithymia – difficulty in recognising or verbalising emotions. Having emotional needs one can’t express
  • trying to resolve issues through logical argument without recognition of the emotional impact. Appearing insensitive
  • being unable to tolerate emotive situations (such as involving conflict)
  • the need to frequently retreat into solitary interests and pursuits, which can be seen as neglectful
  • the need for order and routines, and lack of tolerance for disruptions of these
  • inability to pick up on unspoken clues or read between the lines to determine how a partner really feels, if they don’t tell us

I think I’d better stop there. It’s amazing, looking at that list, that we manage relationships at all – yet we do! Humans are remarkably adaptive. Once both partners recognise that their relationship issues stem from Asperger deficits, they can find ways to work around them. Sometimes the result may seem unusual (you would be surprised to know the number of aspies who maintain a happy marriage while living in different houses, or who have a schedule for intimacy, for example) but with sufficient will on both sides it can definitely work.

What is the common denominator in those sites which warn people away from relationships with aspies? It is that these were people who either did not know their partners had Aspergers, or did not understand what that meant. Maybe, if they had known and understood a little more, their experience would have been completely different.

Taboo Topics – 1. Empathy Deficits

This might be a really bad idea… I’m thinking to write a series of posts about Asperger-type autism topics which we on the spectrum generally prefer not to discuss. Either the topic itself, or my personal view on it, is not usually aired in public. These are issues which autists tend to be highly sensitive about – they are the things we find difficult, our deficits.

So why break the taboo and risk a backlash?

My thinking is only that we can hardly complain that we are misunderstood – the common AS lament – if we do not open ourselves up enough to enable understanding. Sometimes that means admitting the areas in which we fail. Maybe fail is too strong word, too negative? But it certainly feels like failure when I am unable to meet the behavioural expectations of others, and myself. It would be good to re-frame this sense of failure and find a way to accept the limitations inherent to my neurotype – but first I feel I must shine a light on the actual nature of those limitations.

In order to write from experience, I’ve chosen topics which affect me. The spectrum being as broad as it is, not all will have the difficulties in these areas that I do; equally I’m sure others will have difficulties in other areas which I don’t mention. It’s possible some may be issues with my personality rather than autistic traits as it’s hard to separate the two. And I present only my own opinions and can’t claim to speak for anyone else. So with those caveats out of the way…

Topic 1: Empathy Deficits

Naturally, this one is a sensitive topic – because who wants to be known as the person with no empathy? Ugh. It feels like being labelled a psychopath.

Some get upset when this comes up and will automatically deny having an issue. The common, knee-jerk response tends to be: “That’s not true! I feel plenty of empathy.” Certainly, for myself, I can have a very strong emotional response to others’ distress, I can really feel their pain. Do not doubt this.

But the denial of deficit is based on a misunderstanding of the full meaning of empathy. It is more than an emotion, it is not only about feeling others’ pain. Empathy also involves: (a) timely recognition of what someone else is feeling; and (b) understanding (and demonstrating) an appropriate response. Or perhaps I should say a “neurotypically appropriate response”.

Autistics generally have deficits in these areas due to our difficulties connecting with others. Some might assume that your reaction to a situation would be the same as theirs when it is not (I’m not upset, so I assume you aren’t either). We also have varying degrees of difficulty picking up on the clues that someone is in distress, unless it is visibly obvious.

Personally, I don’t do too badly on recognising others’ distress but even once I know, however badly I feel about your pain, I may not know the appropriate response, or may feel uncomfortable enacting it. I may stay silent out of fear of saying the wrong thing and I may be wary of touching in case it crosses boundaries. I may assume you would wish to deal with your distress without my input and walk away, or else, my feelings of empathy may be so overwhelming that I just freeze up.

The commonality with psychopathy, then, is that with both conditions one can appear to be uncaring towards others.

The type of empathy deficit is actually completely different between these conditions. Psychopaths have a deficit with “affective empathy” – that is, sharing and being affected by the emotions of others. Autistics have a deficit with “cognitive empathy” – that is, the ability to know another person’s state of mind.

The psychopath may know that you are upset but does not care. The autist typically cares very much, once s/he knows, but may react inappropriately.

This is not exactly a taboo topic, in so far as many have described the different types of empathy in order to deny the implication that autists lack feelings or compassion. It is my personal view on the issue which is controversial.

My personal view is that it matters very little what I am feeling inside, what matters is how I behave on the outside. I can have all the affective empathy in the world, but what use is that if I am unable to act on it appropriately? I might not deliberately harm people as a psychopath might, but I’m still going to let people down, I’m still going to fail to provide them the emotional support they need in a way they can use. It is by our feelings and our actions that we express our humanity.

I understand why my view is unpopular. To present autistic traits in a negative light may seem at odds with the neurodiversity paradigm, the idea that our differences should be accepted, or even celebrated. But I am not against the concept of neurodiversity, and certainly I agree that autistic minds can have great strengths.

The way I see it, we all want better inclusion of autistics in society, and acceptance of our differences in the way we interact, whether within personal relationships or at work. To gain to acceptance, however, first we need to understand why we have those interaction difficulties. How can we expect people to accept our divergent behaviours with no explanation? That is why I believe we need to start with open recognition of our deficits, however uncomfortable this may be.

Books with Bad Covers

Well, I’m not sure whether to keep up this blog or not, since it was intended as a writer’s blog and then I completely stopped writing. Anyway, a friend suggested I write another post on aspergers/autism while I figure out what I’m doing, so here it is. My topic for today is… drum roll… the changes to how you are treated after disclosing your autism spectrum condition.

I’m going to try and keep this pretty short, to avoid it turning into a rant, and because I’m ill with the flu (or similar) and really ought to be in bed. There’s no reason why it should be a rant, really, because on the whole I’ve had nothing to complain about in the way I’ve been treated post-diagnosis. Actually let me stress that: my experience has generally been positive.

The reason for this post then is more about supporting those autists who fear the reaction to disclosure, or who’ve had bad experiences – and hopefully to open the eyes of those intolerant folks who create this situation by their lack of understanding and consideration.

So, here are some of the negative reactions we can and do receive, once people are aware we’re on the spectrum:

No – wait – we need a foreword. I imagine there may be readers for whom the realities of AS which have been ground into our souls may not, in fact, be at all obvious. So…. in essence, the issue is that we spectrumites tend not to come across as being particularly warm and likeable people. In writing we might be OK, but in person and in speech we (typically) don’t present a good impression. Hence, we are always at a disadvantage compared to others in social situations. Always. Bearing that in mind, let’s proceed to negative reaction no. 1:

Invalidation of our opinions

Because we don’t express them at the right time, or in the right way, or to the right person.

The classic (and devastating) example is when there’s a major project on at work, with flaws in its implementation. Guess who, with the best of intentions, will stand up in the group meeting and point out all the ways in which the project cannot succeed? Guess who then finds themselves kicked out of the team, or even out of their job? (No matter that 6 months down the track, they may be proven right by failure of the project – or the quiet implementation of their recommendations to save it).

But there’s a less spectacular, more insidious type of invalidation that happens as well. There’ll be someone who just doesn’t like us, or feels threatened by us (why?!?). Once your diagnosis is out, it’s easier for them to discredit anything you say. Behind your back, friends and colleagues are being told: “Ignore what Kay said, she doesn’t understand. She has Aspergers; she doesn’t get it.” And suddenly you have no voice, no opinion deserving of consideration.

So tell me: Is it really the autist who lacks understanding here?

Discounting our emotions

Because our inner feelings are judged by our outward behaviour.

I can’t speak for others on this, but personally my biggest emotions are on a time delay – I can be told of someone’s misfortune, and two days later feel completely devastated. Yet society imposes on us the requirement to respond appropriately in the moment.  Argh. Heaven forbid one should be caught smiling at such news. People see us going through the motions – trying to fake the right reaction – and assume we have no feelings, hence the “lack of empathy” thing.

In fact, my emotions are extreme – they go from zero to ten with nothing in between. It’s overwhelming, to be honest. In an emotive situation I may freeze or run away to prevent a freak-out. So I’m standing there frozen and displaying no emotion whatsoever, and people may assume I feel nothing. Or maybe two days later I can finally recognise and voice my emotion, and need to talk it through, only to be told I should be over it and to stop making a fuss?

Who is it that really lacks empathy here?

Exclusion

Because we say or do the wrong thing.

Social skills training is the treatment of the moment for youngsters with Aspergers, which is understandable. I got the opportunity to learn social skills, too, in a way (it’s called life). And yes, you can improve a little, with practice, but it’s a bit like trying to install software on the wrong operating system. AS is not a social condition, or even behavioural (even if that’s how it’s diagnosed), it’s neurological; we’re just wired differently.

The problem comes when people make assumptions and judgement. When we forget to greet someone we might be considered rude, when we don’t join the conversation we’re unfriendly, when we join the conversation at the wrong moment we’re disrespectful, when we say something inappropriate we’re thoughtless… I could go on, but you get the picture. You’d think it would be easier with a diagnosis, but I’m not sure it is. Without a diagnosis, we’re weird; with a diagnosis, we’re not trying hard enough.

What happens is that our friends and colleagues stop talking to us, or their manner towards us changes, becoming distant or cold. They don’t tell us why. If we press them to find out what we did to so deeply offend them we might be told “you ought to know”. Which, if you think about it, is a bit like telling the blind person who trod on your foot to watch where they’re going.

Tell me, is it the autist who has the communication problem here?

In Conclusion

I don’t believe the above behaviours towards people with AS are uncommon, I think they’re happening every day, all around the world. Maybe they seem like small, inconsequential things taken individually, but for those on the receiving end, they can add up to serious problems.

There’s a word which used to have the innocuous meaning: “the ability to recognise the difference between two or more things, especially the difference in their quality”. Yes, I’m talking about discrimination. Unfortunately for those of us on the spectrum, our behavioural and communication differences mark us out.

We are the books with bad covers.

Failing the Acceptance Test

Yeah, I haven’t been blogging. To tell the truth my mental health hasn’t been the best recently. Which makes it hard to be interested in anything much, except trying to work out why, and what to do about it. I resent how introspective that makes me, how self-absorbed, but that seems to be the nature of the beast. Besides, how else do you battle an invisible monster but by throwing a bucket of paint over it? So everything (and everybody) gets shoved off to the side, just to find enough headspace to function at a basic level, and work out what else I can try.

One thing that’s become apparent (and I think it’s worth exploring enough to write it down) is that for all I’ve said about autism acceptance, I haven’t truly accepted my own. And therein lies the problem. Let me explain…

It was a field course for work that finally opened my eyes to the connection between AS and my mental health issues – stretching myself too far to overcome the one plainly and directly resulted in the other. It was a painful sort of Eureka moment. So here was the answer, the reason for my struggles: the strategy of pushing through autism issues and striving to do the same as everyone else, which might have worked OK when I was younger, is simply not working for me anymore. It’s making me ill. I can’t keep doing that to myself.

But. But. But.

You see, now I have a problem.

If I’m correct, the only way to maintain good mental health is going to be acceptance of some very uncomfortable truths. Not truths I want to take on board at all. When you read the below, humour me and try putting yourself in my shoes. How would you feel if you were forced to…?

  • Accept that, however late you came to the realisation of your AS, and however great the differences you see between yourself and others with the same diagnosis, however ‘normal’ you consider yourself, there was no mistake. Let’s face it, you would never have sought a diagnosis if AS hadn’t been causing you a whole heap of trouble. It’s impossible to ignore something that has fucked up affected your life so comprehensively.
  • Accept that, while AS might not get worse over time, your ability to deal with it (work around it, compensate for it, and generally pretend it does not exist) has been heading downhill for years. Will probably continue on this trajectory. Pleasant thought, right? In trying to live your life the way you want, regardless of your AS, you’ve bargained away your mental health – and it’s not worth it.
  • Accept your limitations. Which is so much easier said than done when your limitations seem so elastic, and you remember stretching them in the past. This means deliberately not doing things you want to do, know how to do, have successfully done in the past, because there’s going to be a backlash. It means accepting you have a disability. Because however much you want to get out there and live your life entirely on your own terms, you know what’s going to happen when you try and it’s not worth it.
  • Accept that you’re going to have to get smarter about managing the condition. This means planning ahead and forecasting which situations might be difficult. It means accepting the need to tell people enough to get their help in overcoming hurdles, or taking them down. Because (have you accepted it yet?) you have a disability. The alternative is to avoid difficult activities entirely, and be seen as lazy, irresponsible, antisocial, self-absorbed, incapable, unreliable.
  • Accept that other people are not going to understand (however much you try to explain). It’s impossible for them to comprehend how something so basic and obvious (for them) can be so confusing or overwhelming or traumatic (for you). And when you push beyond your limits and they want to know why you’re ill, you’ll have to keep on calling it depression, or an anxiety disorder, or a stress disorder, or whatever seems to fit in the moment. Officially, autistic burn-out does not exist.

I never know quite how my posts come across, but if you’re getting an angry vibe from this, you’re spot on. Being forced to face up to the above points is seriously pissing me off; it’s not something I ever thought I’d have to do, and I resent being pushed to this point. In modern parlance, it sucks big time.

So yes, I’m all for autism acceptance in general, and I’d surely accept the condition well enough in others. It’s just when things get personal that I fail the acceptance test.