7 years on
Me with Mum, just after I returned from Egypt in the summer of 2002.
It’s now 7 years since my mum passed away, and I feel that the time is right to reflect upon my relationship with her. I'm going to divide this post into two parts: the first will focus on my relationship with Mum; whilst the second will focus on providing tips and suggestions for parents of autistic children. Before I go any further, I'd like to emphasise that whilst I did and do love my mum, that doesn't mean that I will go out of my way to beatify her; I will do my best to be fair and share my opinions as they stand, recognising that some may cause offence. I only hope that people will realise that whilst my opinions may differ from their own, it doesn't make them any less valid. That said, here goes nothing.
Mum & I
When I think of Mum...
I smell hand cream and I shudder at recollections of her hands touching my face after she'd lathered copious amounts on her palms. As someone who's always been hypersensitive to touch, but wasn't aware of it until his mid-20s, it was something I endured more often that I should like. It can be seen from the picture above that I did hug my mum, however. I also think of tea. She drank it as if her life depended on it, and taught me at the age of 7 how to make a cup for her in the mornings (English Breakfast, one sweetner, skimmed milk added after the boiling water, strong). I suppose this made sense, given that I used to get up earlier than she did. On a similar theme, I think of mouth ulcers. Mum liked her food hot, scolding hot. She also liked to ensure that there wasn't any chance of our meat/poultry being brought back from the dead; it always tasted well, however. These memories may seem to be harsh or critical, but I remember them with a perverse sense of fondness.
It wasn't all bad. Mum worked incredibly hard to ensure that Dad, my sisters and I never went without; working part-time whilst maintaining the household with matriarchal authority, whilst also taking us away on holidays and encouraging us to do our best at school. Moreover, she always did her bit to help the community, both within the church and the school; sitting in on the school governors and PTA meetings, helping with the dinner dances, becoming a eucharistic minister, and providing an ear to her friends when needed. She also had the temper of an Irish Roman Catholic which was quick to flare-up on occasion (think Father Ted and you'll get the gist), but given her mental health difficulties (more on that below), I think that in hindsight it's understandable.
Conflicting World Views
Looking back, I recognise that I wasn't the easiest person to raise. Diagnosed with Type 1 Diabetes in 1987, seven years before the term Asperger's Syndrome was used in a diagnostic capacity, I was labelled as different from an early age. Consequently most of my meltdowns were classified as hypoglycaemic episodes (low blood sugar levels, which aren't always mutually inclusive with meltdowns), and people would often tell me I was spoilt and/or rude. They would label my behaviour as angry, often pushing me for an explanation, when I needed time to process what was going on; it was frightening and frustrating in equal measure. Mum always stood up for me when I needed her, however. She, too, had a difficult upbringing. She was beaten by her father, and was diagnosed with manic depression (now bipolar disorder) back in the 60's when mental health conditions were considered taboo and repressed/dismissed. Granny Anne (Mum's mum) was mortified when Mum informed the powers that be about what happened at home; things became strained, so Mum ran away from home to her aunt and uncle's aged 14. I don't think she ever really got over that. She was justifiably angry, and never reconciled with her father before he passed away.
The problem of our differing verisimilitudes arose when Mum and I argued. I think she saw her father's temperament in me, and told me on more than one occasion that whilst she loved me, she didn't like me very much. Another issue was that she brought me up to be honest. Autistic people (myself included) tend to take words literally, and, unfortunately for both us, this meant that I spoke my mind when perhaps it would have been best to keep my council (something which I'm still working on when upset). The fact that I was verbally unable to articulate my thoughts and feelings, coupled with a lack of cognisance of my sensory differences, meant I was always hyper-vigilant, confused and exhausted; I spent a lot of time at home treading on egg-shells until I knew what kind of mood Mum was in. That said, there were occasions where I lost my temper and vented my frustrations. Mum and I are similar in that we both like to have the last word, and more often than not she would end arguments by saying, "Last word".
Don't get me wrong, we did share some laughs. There were times when I would be feeling down, so I used to set down on all fours and crawl up to where she was sitting, before putting my head up her skirt and saying, "I want to climb back up". That used to elicit a giggle. Oftentimes, as I walked past she would point at my bum and say, "I made that" (I got glutes), much to her amusement and my annoyance. I also remember times in the bathroom from when I was much younger, where, after sharing the sacrament of the body of Noddy with my sisters (an empty bubble bath bottle filled with water up to the neck of the cartoon character) she used to pretend that she wasn't our mum, saying "No, she's not here", which wound up my sisters and I no end but was funny nonetheless.
Mutual understanding at the close
More than anything, I think Mum wanted me to be happy; a virtuous goal, to be sure, but somewhat quixotic for me, given that I wasn't aware of my nuero-status, let alone how to cope with that. One of my fondest memories was back in the summer 2004, after I passed my A-Levels with the requisite grades to go to uni. Two years earlier I had failed my first attempt at the exams, so when I got the results I needed it was a huge relief. I was sat on my bed, rocking back and forth whilst listening to a Driving Rock CD on my sister's Walkman, when she burst into my room with a big smile on her face, arms spread wide. I'd like to say that things continued on an upward trajectory, which in a round-about way they have, but they had to get worse before they got better.
Fast forward 7 years, and Mum was diagnosed with terminal cancer. The next 10 months were tough for everyone; I lost my job whilst I endured therapy at her behest (I became so fixated on it that it became unhelpful), and I spent nights traipsing around the back garden, listening to Chopin, Beethoven, Mozart, et. al, whilst thinking in rhyming couplets as I prepared her eulogy (I knew it would befall to me to give it, so I decided to write it in the form of a poem). During those final months we arrived at an understanding of sorts. Her work as a SEN teaching assistant made her aware of the fact that I'm autistic and she told me her opinion. She no longer berated me for wanting time to myself when the rest of the family congregated and the house started to resemble a train station.
Mum was regretful that she wouldn't get to meet her grandchildren, so, rather typically, I said that it would be ok because I wasn't planning to have any children for the foreseeable future (it wasn't my best joke). She was worried about how I would cope; I told her that I'd be ok (which I am). I remember in the lead up to her death that I told her that I viewed people as sheep, moving around and following each other aimlessly, or so it seemed at the time. She didn't criticize me. Her final message to me, relayed by my sister, was to look after my flock. No pressure there, then.
Tips for parents of Autistic children
Fast forward another 7 years and I find myself in a loving, committed relationship which on every other weekend also includes being a surrogate father to my girlfriend's son (he still sees his father regularly). I've been given permission to use his name, but I'm going to use one of the (many) movie characters he pretends to be, so I'm going to say Captain of America (the preposition 'of' is imperative in this instance). Now I find myself in a position where I can begin to understand the difficulties my mum had raising me, since Captain of America (CoA) is being assessed for an autism diagnosis. I'm 99% sure he's one of the neuro-diverse gang. Whether the multi-disciplinary team has enough courage to label him remains to be seen. Hence, I'm going to utilize my cumulative experience to suggest some tips for raising autistic children.
1. Engage with your child's "special" interests (within reason)
Superheroes do lunch
I think it's important to share your child's interests. Here, CoA is dressed as Buzz Lightyear, whereas I'm Hulk Smash (his words, not mine). We're eating lunch because it will make us big and strong. If CoA doesn't want to eat any more, Holly (my girlfriend) and I encourage him by saying if he wants to be big and strong then he needs to eat. It's circular logic, but it's working for the time being. CoA is an anxious child, which sometimes presents in the form of angry behaviour. Pretending to be a movie character enables him to mask his insecurities and anxiety, allows him enough control of the situation so that he can function, and facilitates him to get things done (within reason). We try to set limits on the time he can be a super hero (he needs to realise that not everyone is going to allow it), and set clear boundaries (e.g. no hitting other children). We also try to share our interests with him, but he doesn't seem interested at this point (which is hardly surprising, he's 4).
2. Be active
Too much screen time makes CoA (and me) a very grumpy boy, so we do regular exercise (super heroes need to train, of course), which helps his hypermobility (he ain't got glutes, yet). Sometimes, Holly has to tell us to calm down (I don't know how one's expected to sit still whilst watching Ninja Warrior), but it's good for us, and his co-ordination has benefited enormously.
3. Don't Compare and Despair
Autism is a neurodevelopmental condition. As such, our brains function and develop differently to neurotypical people's. When I was 5, my mum was told by my school teacher that whilst I'd always be good with my hands, I'd never do anything academically. 10 GCSE's, 4 A-Levels, and a bachelors degree later, I still struggle to understand why my teacher felt the need to make that prediction; it feels so unnecessary, lowers expectations, and can lead to low self-esteem (it was also proven completely false, but that's beside the point). So I beg of you, don't become down when things don't go as expected/milestones aren't reached. I've seen many parents brag about their children's achievements and I feel pity for them, not envy. Living vicariously through one's offspring must be an exhausting, demoralising experience, especially if by doing so the parent pushes their children beyond their limits, resulting in resentment and communication difficulties. It just makes no sense to me. Don't get me wrong, I want CoA to be the best he can, but I don't expect him to be an Olympic athlete, nor a Nobel laureate; I'd much sooner hope he learns to help other people, however he (legally) can, which is a skill that seems to be in short supply these days.
4. It's healthy to be sceptical of proposed therapies and interventions
An Autism diagnosis usually comes with a proposed list of therapies and interventions designed to help your child become more "normal". I think it's important to weigh the pro's and con's before embarking on any action. Shona Davison has written a great post on one such therapy, Applied Behavioural Analysis; I'll leave you to draw your own conclusions. What I will add, however, is that masking - the act of pretending to be "normal" - is extremely difficult and exhausting, so there will always be a cost of doing this.
5. Allow your child to recharge
If your child has had a busy day, please don't then add extra pressure onto them. Allow them to do something they enjoy for an hour before making them do their homework/chores, and don't bombard them will questions. Trust me, they'll be grateful for it (although they may not show it).
6. Give yourself a break
One thing that my mum didn't do often enough was take breaks from being a mother. Parenting is probably the hardest thing a human being can undertake, irrespective of your child's neuro-status, so don't feel guilty for taking a break to recharge and be you, the person, as opposed to you, the parent. It's in your child's best interest to have a parent that is fully engaged and motivated, and taking some time for yourself will help with this. What you do is entirely up to you, of course, but even if it's for half an hour a day, you deserve it. Remember that you will make mistakes. That's ok, you're human.
7. Do reach out to autistic adults
If you're sincerely interested in helping your child to develop as a human being, then you're going to have to look beyond their behaviour and see the world through their eyes. This may prove difficult, but the good news is that there are many autistic adults out there who are ready, willing, and able to share their experiences with you. There are three main ways of doing this. First, you could come to one of our open training sessions. or book us to come and talk you at your workplace/school. Second, using social media hashtags such as #askingautistics may help you to engage in discussions which offer an informed, unique perspective. Third, you could read our blogs and books. We are an under-utilised resource, so please, let us help.
It may surprise you to know that I don't really miss Mum. It's not because I loathe her, that couldn't be further from the truth. The truth is that I'm reminded of her daily, and my memory is better than most, so as long as I remember her, I can't really miss her; life is all about making lasting memories, after all. Furthermore, she lives on in my sisters and me, and I recognise her traits in all of us. Nevertheless, I hope that on whichever existential plane she now resides, in whatever shape or form that takes, that she's at peace.