Autism - I wish I'd known!

I was already in my 50s when diagnosed with autism. It was mindblowing and overwhelming as it explained so many of the struggles of my whole life. More recently, I've found I also have ADHD, which has explained a few remaining issues which autism didn't.

Having lived the first 50+ years not knowing this, in many ways it doesn't matter now. There's nothing I can do now about the problems I had growing up - at home, school, university, work, with relationships, with church, socially ... 
I muddled my way through these things, and most people would think I was 'successful', whatever that means. But it all could have been so much better if I'd known what I know now! 

So there's a certain amount of regret that throughout my whole life I've been misunderstood; I've continually tried (and often failed) to do the right thing; I've continuously tried (and often failed) to fit in; and I've been bewildered by things that others seemed to just know or could do. All of these have led to being mentally, physically, spiritually and emotionally overwhelmed and exhausted. To know now that there's nothing wrong with me - it's just that I think differently to the majority - is both a comfort and frustration. It's a comfort because my life suddenly makes sense, and it's frustrating because of the irreparable damage caused by 50 years of being misunderstood and consequently mistreated.

A bigger regret is the effect that not knowing has had on my children. Because I didn't know my brain was wired differently from the majority, I assumed that when my children struggled with the same things I'd always struggled with, that it was normal. Only recently have they each discovered their own diagnoses. I hope that at least knowing in their 20s, they will be able to navigate the rest of their lives better than I have mine! 

Thoughts on mental health

 I'm no mental health expert, and my experience of mental health issues is limited to specific cases. However, I've made a few observations that might be helpful. 

First, some background. 

My brother has suffered from a debilitating mental illness for over 30 years. This has stopped him having a job, forming relationships, living independently, and enjoying a typical way of life. He knows what he's missed out on, and continues to miss out on. It's completely devastating and heartbreaking for him. 

1. He is not stupid

His mathematical brain is like few I've ever encountered. He has 2 maths degrees, but his skills were evident years before university. As a primary school boy he sat on his bed working out prime numbers.

Rubik invented his cube in 1974. My brother, at the age of 8 or 9, could solve the cube easily, regularly within 15 seconds. I can't remember his record time. He would take the cube apart, soap the pieces to make it move more freely, and then put it back together in order to beat his record. Friends used to bring him their cubes to sort out. Sometimes they would try to trick him by taking pieces out and putting them back in an unsolvable configuration, but he would know immediately he looked at it. He can still solve it, though due to medication and motor skill impairment, it might take him a minute now. 

2. He is an adult

He hasn't been able to have the life experiences that many of us have been blessed to have, but he is a grown man with similar feelings, concerns, desires and expectations. Most of these have been thwarted. But he still has opinions and makes choices. 

3. He knows he's not well

This is one of the most heartbreaking things. He knows when his mind is confused. He knows when his reaction hasn't been 'normal'. 

4. His mind is overloaded

His mind is completely full of everything that has ever happened. He remembers everything. His mind links words, subjects, events, thoughts, in a way that is difficult for others to follow, but make complete logical sense to him.
It's as if everything is still in the forefront of his mind, and nothing has been stored into 'long term memory'. So he'll suddenly express anxiety over something someone said 50 years ago which the majority of people would have completely forgotten.

How to help

My brother is a human being equal to all other human beings. His rights are the same - access to medical care, access to the care system, access to social security. At least, they should be. However that doesn't seem to be the case. So there are a few things to say to those who interact with people in my brother's situation.

1. Don't treat him as if he's stupid

He's probably more intelligent than you are. So don't assume he doesn't think about how you're treating him. During his recent stay in hospital he phoned me and said he'd been told "We're going to give you some happy pills." That perturbed him because he didn't know what they were, or what that meant, so he wasn't sure whether he should take them. So explain what meds you're giving him, and why, and how they might help him.

2. His life and health matters as much as anyone else's

His dentist left him with very ill-fitting dentures that damaged his mouth, after having already made him wait 6 weeks without them. Conversely, my dad's dentures are returned to him asap and within a matter of days. And if they were painful or didn't fit, they would be sorted out. If you need dentures, 6 weeks without them is a long time. I'm appalled that in the dentist's view my brother clearly didn't matter.

3. Talk to him and treat him like you would any other adult friend

Listen to what he says. It might be difficult to understand, but do try. Don't dismiss his concerns. Talk them through with him. You may not know exactly what they are, and you may need patience in trying to help him through them. But don't assume he's talking nonsense, or that something that happened 40 years can't possibly matter now. To him it does. He told me on the phone that he was worried about a conversation with an aunt and he didn't know if she was cross with him. This conversation took place when he was about 6. Many of his fears and concerns can be allayed by talking things through and reassurance. 

Don't talk over him. Now, we're generally bad about this in our family. Much of it is to do with our widespread neurodivergence and the difficulty in knowing when it's our turn to speak, or how long to speak for. However, my brother gets talked over a lot. Because people don't understand his thought processes they may assume he's just talking incoherent nonsense. I can assure you that everything he says is the upshot of complex thought processes unique to him. If you wouldn't talk over other friends, don't do it to him. Encourage him to explain more fully and coherently what he was saying. Engage him in the conversation. He isn't invisible.

4. Try to understand how his mind works

Be very careful what you say. If you say something to him he will take it literally. I'm similar. So he told me the other day that he wasn't allowed to talk to one of his house mates. I asked him why he wasn't, and he told me that somebody had said "Don't talk to him". Now I very much doubt that the instruction was never to utter a single word to the person in question ever again. But that's how he's taken it. Similarly, he told me on the phone that I'd previously said not to do something. What he'd understood was not what I meant at all. It's important to make sure he understands what you mean, not just the words you say. This can be difficult and takes concentration and time, but it's helpful for him.

Don't tell him off, especially not like you might a child. Sometimes his actions are outside the realm of what's considered normal, acceptable behaviour. Sometimes he may accidentally break, drop or spill something. All of us do these things from time to time. However, his autism, his illness, and his medication side effects mean his body, mind and emotions are more often impaired compared to a neurotypical person. And if he breaks something, don't have a go at him. It's not carelessness. His reaction to a situation may not be understandable to you, but there will be an explanation in his mind as to why he was made anxious, fearful, defensive or agitated by the situation. He knows if he's caused harm, damage or distress, and he will feel awful about it, but probably can't help it. This isn't to say you shouldn't agree or point out that it was a bad reaction. But instead of telling him off, talk to him about what made him do whatever it was. Then help him to see that perhaps he misunderstood or over-reacted to whatever triggered it, and if the trigger happens again, to know better how to deal with it.  

  ..........

As I said to start with, these are just some of my personal thoughts and observations from my own experience. There are plenty of other things that could be said! 

Autism and me

Autism diagnosis was a big relief to me. What an epiphany! At last I knew why I've been bewildered by the world around me throughout my whole life. I realised that the way I think and react is not the way that everyone does. All my life I've been trying to fit in with what is expected, and subconsciously managed to mask in order to do so. I realise now that not everyone does this. I also realise now how difficult and exhausting this has been!

Being autistic is not a disability. Sadly, some people suffer greatly and never manage to interact with the neurotypical world. But it's often a really positive thing and we have so many good characteristics! It grieves me that autistic people and their skills and gifts are often dismissed and overlooked because they are so misunderstood by the majority. It's not just that I may not understand you, but equally neurotypical people often don't understand me. Yet because my way of thinking/behaving is in the minority, it is usually seen solely as my problem rather than it being mutually equal that we don't understand each other.

Nowadays, autistic people are more sought after in many professions. This is because they tend to be truthful, honest, reliable, loyal, hardworking, and often above average intelligence. That's not to say that neurotypical people aren't, but autistic people more consistently so.

It's interesting that friends with experience in the field thought I was autistic before I did – and assumed I already knew!

Autism isn't quite like the spectrum that it's often called. People aren't 'more' or 'less' autistic. It's more like spectra within a wheel rather like this picture. Different people will experience different extents of different traits. Often someone's traits will be made more difficult to manage by the way they are treated, or the situation they find themselves in. It's essential that autistic children and adults are given the understanding and help they need to navigate a way of life developed by neurotypical people.

I'm writing this because it would be wonderful if it helps even one person understand better so that someone avoids some of the trauma I've been through.

These are my personal autistic traits, and will be different for different neurodivergent people. I'm not saying they are exclusive to neurodivergent people either. Many people will have some of these characteristics due to nature or nurture, but don't have ASD. A symptom of a brain tumour may be a headache, but not all headaches are caused by a brain tumour.

Social interactions

Every. Single. Social. Interaction. Is stressful for me.

The level of stress depends on who I'm interacting with, but I am anxious before meeting even good friends/relatives, and even going to my regular activities. Will I be on time? What are they expecting of me? Will I say the right things? Will I act or react in the way I'm apparently meant to? Will I fit in and be accepted? Do I look ok? Am I wearing the right clothes? Will I understand what they mean when they talk to me? Will I be able to answer appropriately? Will I be understood? Who will be there? Will anything unexpected happen? Will I be able to handle any emotions triggered?

Having had to subconsciously learn (I didn't know it came more naturally to others) social conventions, I constantly worry that I'm not doing it right. This is exhausting.

Growing up and at school everything in my head became rule based, and I did what I thought I was meant to do, learnt by copying. Usually I worked it out before it was a problem but sometimes I got it wrong, and was completely bewildered and didn't understand what I was being told off for. This overwhelmed me emotionally and then I was in trouble again for not coping emotionally (melting down) with the injustice or inhumanity of the situation. This has all led to a lack of self confidence and self worth. 

Honesty

I am scrupulously honest. You'd know absolutely if I were to lie to you. It is to the point that if I say something that is true, but later I think you've understood something different from what I've said, I will come back to you to clarify it. I will also always come back to you if I find what I've said isn't true, though I'm beginning to learn that a lot of people just aren't that bothered whether something is true or not.

It was a revelation to be told that everyone says things that aren't true sometimes. It was also a shock to be told recently that you don't always have to say the truth. I'm still trying to work out when I'm supposed to say what's true and when I'm not!

The autistic world is a much more honest one.

Auditory processing & communication

a) I take time to process what people say to me. So answering them is difficult. It may be that hours or even days later what has been said sinks in. I'll then have questions, but people are often impatient when I come back to them later to clarify things, or bring up the same issue again.

b) I say nothing at all, or everything. You either get nothing out of me, or every single thing that's on my mind. I have difficulty regulating this.

c) Sometimes verbalising at all is extremely stressful. Yet many times I've been forced to speak to people. I often find communicating my points and questions by email much easier. It takes me days sometimes to write such emails, but by the end of it I will have explained/asked exactly what I needed to. This is impossible for me in a conversation because of what I said about processing information.

Unfortunately some people insist on purely verbal communication. They assume that it's always best to talk and don't realise how incredibly difficult that is for some people. They may also refuse to respond to other forms of communication, because they don't understand this.

This is basically denying or ignoring my thoughts and dismissing my communication difficulties. It can be quite damaging and hurtful, not to say selfish and unkind, to insist on a certain way of communication that others can't cope with and dismiss their preferred communication method. Especially when they have agonised for hours over how to communicate what is important to them!

d) If you tell me something, I will believe you and take what you say literally. Yes that means I'm gullible. But once again it's a more honest way to live, and is positive as it means I always take you seriously.

e) Sometimes I've been completely bewildered by being accused of being rude. That is never my intention, ever. I say things as they are, and as I understand them, and struggle sometimes to shroud it in all the social niceties. This is particularly hard as a woman in often misogynistic environments where assertiveness and outspokenness are seen as undesirable or aggressive in a way that they wouldn't be if men said the same things.

f) I can't hear song lyrics. So I actually don't know the names or words to many songs. I recognise loads of music/songs when I hear them, but I couldn't tell you what they are called or what the band is.

Sensory issues

I have always hated wearing anything with wool in it. I can't bear it next to my skin. I've also always been very ticklish and can't tolerate light touch sensation. 

I jump at noises – not necessarily loud noises, but any sudden noise. This got worse since suffering from PTSD symptoms after being deeply hurt by longstanding friends.

I hear things that nobody else hears. (Strange as I'm deafer than I used to be!)

Stimming

In relation to the above, this wasn't an obvious issue until the PTSD symptoms set in. Now I may twitch or shake if a situation is particularly stressful or I think about past interactions that caused stress. This is semi-involuntary, in that if it starts I can usually minimise it, though it sometimes helps me cope with the emotional overload.

Perfectionism

In some ways this made me particularly good at my job. People's lives were at stake. Various of my colleagues said that they would want me to be the one to check their treatment plan if ever they needed radiotherapy. However, it meant that I would agonise for too long about whether it was the best possible plan, and sometimes found it difficult to know when something that wasn't perfect (there's no such thing as a perfect plan, or anything perfect in this world) was acceptable. So I could also be pretty slow at my job.
I wish I'd known this about myself before I retired! It would have helped me no end in being more pragmatic at work.

Face blindness

I have trouble remembering people's faces and won't necessarily recognise them until I've met them quite a few times. I've often had embarrassing situations where I've seen somebody 'out of context' and didn't know who they were.

Eye contact

Not long after we were married, Paul mentioned that he'd noticed I didn't make eye contact with people when talking to them. Ever since then I've made a deliberate effort to look at people during conversations. This is exhausting as it is a conscious effort, I find it uncomfortable, and sometimes I just can't do it.

Not letting things go

I can't let things go. I have to stand up for truth, justice, and compassion. I have done this many times at great expense to myself, and it was doing this very thing that led to PTSD. I don't regret doing it and will continue to do it, as I believe it's the right thing to do. But it does take it's toll in this dishonest world.

I easily get fixated on details rather than always seeing the big picture.

Reliability and loyalty

Related to not letting things go, I don't give up on things easily. My health has made me do it more often recently, but at least that has given me an acceptable reason/excuse which means I don't feel quite so dreadful about it!

I try to do whatever I can to help other people, and fit in with them, do whatever I'm asked to do, and put myself out for them. I think I thought this is what you're meant to do, so I've always done it, and that's fine.

If I say I'm going to do something, I will if it's within my power to do so. I can't bear letting people down, and I hate the fact that I've had to sometimes because of my health.

I'll always defend you if others unfairly criticise you, even if I get hurt because of it, and even if you've previously failed to defend me or give me the benefit of any doubt.

Memory

My long term memory, and particularly my memory of exactly what people have said/done to me when it's been something hurtful, is profound. I struggle recalling things that happened a few minutes ago, especially with chemo brain, but I remember events that took place years ago with vivid detail.

Emotional overwhelm

Sometimes throughout my life I've become emotionally overwhelmed, and have what might be described as a meltdown. This is literally when I can't cope with emotions arising from how I'm being treated at the time. People who've experienced this have seen it purely as my problem and me consciously behaving badly, despite that not being the case and it being more about how and what they are doing to me.
As I've said, honesty is of utmost importance to me. So emotional overwhelm is most often triggered when my honesty and integrity are disputed. This might be having my motives unfairly questioned, or being misunderstood, or not being believed.

Being an autistic woman

It's only recently that it has been appreciated how many women are autistic, as it's been thought of as a largely male disorder. But that's because autistic traits manifest themselves differently in men and women. Women also have a strong natural desire to fit in, and from years of oppression have learnt to do what is expected of them, and so autistic women have become incredibly good at masking.

Having only discovered in the past few years that I was autistic, I'm just beginning to make sense of my whole life. I wish I'd known much earlier as it would have helped so much with navigating it. I also sometimes wish I wasn't autistic as it is very hard work continually trying to fit in with what other people expect.

However, the advantages are enormous, if only neurotypical people realised!

What use am I?

I largely wrote this a few months ago, and it was going to be my first blog. But then Covid-19 exploded, so I decided to post Who’s in Control instead.

Now I’ve come back to this one, I realise that perhaps it’s uncannily become relevant to more of us. Sadly, some friends I know who have lost their jobs because of Covid-19 have been left feeling useless and wondering what the point of life is. Tragically it also seems to be the case that older people with their wealth of wisdom, knowledge and experience, have been treated as dispensable during this crisis.

When life changes drastically, and you can’t do many of the things you once did, and your independence crumbles making you a burden to others, it’s easy to wonder what your worth or use is.

• I’ve had an ongoing relationship with cancer for over 5 years, and it will always be with me. I’m currently on chemo, reducing my immunities to infections and viruses. Due to Covid-19 I’m shielding. My only trips out are to the Royal Marsden Hospital. Initially I was also isolating from my family while they were interacting with the outside world, though because of my vulnerability we must now stay in all the time. So I was initially increasing their risk as they were having to do all the shopping etc, and now we're increasing the risk for others we're relying on.

• I’m afraid he’ll be embarrassed by this, but I have a wonderful husband who has had to cope with a great deal throughout our 28 years of marriage, and even more so in the past 5 years since my diagnosis. He's spent his days off with me at the hospital, sometimes taking unpaid leave to be with me.
  He’s done a lot of waiting –  while I’ve had scans, blood tests, an operation, chemo … waited for clinic appointments, sometimes rejoicing over good results, sometimes coming to terms with bad results, and sometimes not expecting me to survive the night. Being the patient is hard enough, but I believe waiting and watching can be even worse.
  There have been times when he has needed to do everything at home, and everything for the children, whilst also working full time. He carries an enormous emotional and physical burden (which few outside of the family recognise because he doesn't draw attention to it) and he's done a much better job than I would have had the tables had been turned! 

• I have three amazing children, and I am overwhelmed at what lovely adults they’ve become in spite of all my failings as a wife and mother. It grieves me that all they and Paul have been caused so much pain, stress and anxiety by my cancer diagnosis and treatment, and other circumstances beyond our control. They’ve had to give up so much, in the way of fun times, plans, security and carefreeness, and academically too.
• Amongst my parents and siblings we have a family joke about me being the useful daughter. I have been no more useful, and probably considerably less, than the others! But the joke endures. The rest of my family are suffering all kinds of health problems, and I’m not able to do anything. I worry about them, and I know they’re also worried about me.
• I used to be a radiotherapy physicist and I loved my job (well, much of the time anyway!) I can’t do that any more. I needed a lot of sick leave, and my cognitive skills are impaired due to extensive treatment. Yes, chemo brain is a real thing!  And because people’s lives were on the receiving end of what I did, I couldn’t risk making a mistake. But I hear of the struggles in radiotherapy departments because of short staffing and extra policies and procedures due to Covid, and feel useless that I can’t help (especially as I've been informed that my lapsed Clinical Scientist registration has been reinstated due to the crisis!).
• For many years I’ve been an active church member and have been involved in many different activities – children’s clubs, toddler groups, Bible studies, ladies’ nights, music, cooking, baking, talks, organisation, admin, concerts, quiz nights, and so on. Right now I’m not able to do much of this at all  - even if it was possible amid Covid!

So what’s the answer? 

Here’s a few thoughts from my perspective as a Christian:

• The work of God is to believe in the one he has sent - this was Jesus's answer when asked by his disciples what they should do to do the work God requires. (John 6v29)
  Any acts of service are good, but not our primary work.
• My worth is not in what I do, or how healthy I am, or my age, or what I look like.
  God made me in his image and he loves me. Nothing I did or do makes me right with him. Jesus already achieved that on the cross where he took the punishment for my sin. There was nothing I could do about it, but his love, grace, mercy and compassion did everything. God doesn’t need anything from us – he doesn’t need my paltry attempts at organising, giving talks, playing music, or baking cakes. Everything I am or have comes from him - including the fact I’m alive. So 'doing good' doesn’t earn our salvation, though it is evidence of our faith and desire to please God in gratitude and love for him what he has done for us.
• People often say things like "Sorry I can't do anything to help - all I can do is pray".
  All I can do?! What else could be better?! Yes there are sometimes practical needs to be met, but God cares for his children and will choose who he will use to do that and how. I'm not indispensable - cancer has shown me that - and the best thing anyone can do is pray.
• I don’t like having cancer. It isn’t what I’d choose, and it’s not good. But God has allowed it to happen. I don’t know why, just like Job didn’t know why he suffered as he did. But as I’ve said before, I’m grateful for many things I’ve learned through having cancer. The Bible says we should give thanks in all circumstances (1Thess 5 v18). And in a way (and I know some will find this difficult!), I am thankful for my cancer.
• The gifts I had for things I used to do, but can’t at the moment, came from him, so I have a responsibility to use them. I did use them while I could. I wish I’d used them more. I hope to use them again. Through allowing my cancer though, God has given me new gifts, and so I can do things that I couldn’t before, things that only people who’ve experienced what I’ve experienced can do. We should never feel useless just because we can’t do what we once did; our circumstances have changed; or we can’t do what others do. God has work for each of us – all different parts of the same body, which can be used at different times for different purposes. We can serve God whatever our circumstances, and he will give us whatever we need to do it!  (1 Peter 4 v11)

Having cancer has given me a whole new set of things I can do (though right at the moment I can't do many of these because of Covid)

- whether it's encouraging the lady next to me having chemo for the first time; talking with others in the same boat; telling people that Jesus is the hope I have in the face of cancer; meeting new friends; spending more time with friends and family, to listen, talk, support, laugh, pray; supporting church and other organisations ‘behind the scenes’ - 

but  ‘doing’ isn't where our worth or use comes from, and we don't become worthless or useless if we can't 'do' any more. 🙂

Who's in control?

For many years I've thought about writing a blog. Others have suggested it too. Several times I have started, but not carried it through, for a variety of reasons - inadequacy, inability, insecurity, insufficiency ...
Anyway, here goes ...

Fear and uncertainty have been overriding feelings that I've seen expressed during the Covid-19 crisis so far. 

Will I catch the virus? 
How badly will I get it? 
Will I have to go into hospital? Will there be a ventilator available for me if I need it? 
Will I die? Will any of my loved ones die?
How will I be able to isolate? Will I be able to buy the food I need? 
What will happen with my job? How will I manage financially? 

None of us know the outcomes for us individually or for our families and friends. This virus doesn't discriminate. There seems no way of knowing who will suffer badly, and who won't. Who will be ok, and who won't. 

Whilst I'm as worried as anyone about this situation, I think cancer survivors (along with sufferers of other major illnesses) have a head start on this, and I'm grateful for that:

• We already know what it's like to come face to face with our mortality.
  Like Covid-19, cancer doesn't discriminate in terms of who suffers from it, how badly, how they respond to treatment, and whether they are cured or not.
• We're used to isolation and loneliness. I'm used to having to stay inside; avoid contact because of risk of infection; accept help from other people; and watch church online.
• We're used to our plans being scuppered, and the future we assumed we were going to have being turned upside down, and potentially taken away from us.

Most importantly, we know what it's like to realise we really aren't in control!

This was the overwhelming feeling for me when I was first diagnosed with cancer just over 5 years ago. And it's this that has now instilled fear and panic in people globally - the fact that we have no control over this virus.

As a Christian I know that God is in control. I've known that for many years. But if we're not careful, believing that and living like that can become separated!

We all make plans - and that's not wrong. But we need to always remember that God's plans may be different from ours, and to be prepared to yield our plans to his. And, like Job, to recognise that everything comes from God and it is his to give or take away.

• For a long time after my diagnosis we didn't dare plan anything. However, it's important in order to function, and so we plan but leave it with God as to whether our plans come to fruition. We book holidays keeping in mind even at the point of booking that they might not happen. We plan events, and outings, but know that when it comes round, we might not be able to go. We accept that. As Christians we know this deep down, but maybe we all need to have this thought higher in our minds, and be more acquiescent when things don't pan out how we want!

• During treatment I work out which days I'll be out of action, and on which days I can arrange things, only for that all to change with a bad blood test result delaying chemo for a week, or even two. So we try to live according to the proverbial 'one day at a time', or as the Bible says not worrying about tomorrow. Time after time, when it all seems to have gone wrong, God's timing has turned out to be perfect! Again Christians know this, but I for one can be so slow to learn!

I'm scared. I'm scared for my family and friends in the current crisis, some of whom are or have been seriously ill. I'm scared for people I know in the frontline of the NHS and other services. I'm scared of dying of coronavirus, of dying of cancer ... of dying.

But I know that God isn't beaten by coronavirus, or cancer. He hasn't lost control of his world, but instead is working out his perfect purposes. Perhaps he has allowed this situation in order to give the human race another chance to recognise this very fact!

Praying for my family and friends through this unprecedented awful time, and sending love to all.