Autism and the facts of life

I sometimes feel I’m forever stuck in a storm of autism statistics. Raining down are brutal truths that affect all about bullying, exclusion, lack of provision, low educational achievement, poorly trained teachers, homelessness, unemployment, depression and more. Facts and figures that seem designed to floor people at worst or fuel their fight at best.

Then there’s the genetics research and studies around that swirl about in people’s peripheries and remain there until they become relevant. Like the likelihood of a younger sibling being diagnosed with autism.
The dilemma of a second child had weighed heavy on me and my wife. Not so much setting the weather of our well-being, but certainly unbalancing it somewhat. Pretty much from the day Isaac was born.

Isaac’s birth was barbaric. After a lifetime in labour, the doctors, brandishing ghoulish looking implements, set about extrapolating our distressed boy. Prodding, plunging, pulling. At one stage, the doctor was yanking at an instrument suctioned to my boy’s head in the manner of dislodging a particularly stubborn cork from a bottle of wine. With such force that his temples were throbbing, arms’ shaking, and veins pumping. Eventually, Isaac was dragged out of my poor, poor wife, resembling a bewildered creature washed up from sea.


I’m not aware of any conclusive research linking traumatic births with autism. Anyway, it’s not somewhere I can psychologically afford to go.
My wife talks of numbness and delayed shock. Of horrific memories. That, in some sort of perfect storm of parental crisis, surfaced violently and vividly at exactly the time Isaac started missing developmental cues. Whilst other mothers talked of amazing times, emerging from the first year with a fabulously alert and exploring child, Isaac seemed stuck. As well as being beaten by his behaviour and full of anxiety, my wife somewhat cruelly was given the added burden of terrible birth memories.

Being selfish and ashamedly self-pitying, I felt practically punished by being around family and friends jollily procreating at a rate of knots. Defensive and depressed, comments like ‘Isaac would benefit from a sibling’ cut through me. I felt sorry for myself, my wife and Isaac. My wife had more humility. But perhaps felt it more personally. A sense of failure swamped her. We were in a rotten place if truth be told. We had a distressed, delayed child who was disrupting our lives, if not to breaking point, then not far off. Did not having a second highlight our pragmatism or shine a harsh light on our inability to cope with parenthood?



And then at diagnosis, the second child issue got a little more complex. As sensitively handled as possible, the paediatrician’s parting shot was to tell us that if we had another child he or she would be 5% more likely to have autism. Unlikely, but still (kind of) significantly more likely than the standard one in 100 that Isaac had become. Now there was a whole new imponderable – another child might have autism.

Yet I don’t actually recall us dwelling on this in the days, weeks, and months after diagnosis. Perhaps autism had liberated us from the corrosive second child obsessing. It certainly ceased the questioning of our parenting abilities. What we were unified on was a steadfast focus on Isaac’s welfare. To embrace the condition; to fight for him; to make up for his troubled first years. And in doing so, we’d become a confident ‘one child’ family. Proud to say it to people. Solely concentrating on Isaac was the sensible thing to do. It sapped all our energy and time. It was best for us, and best for him.
That was the case for the best part of 18 months. It started to dawn on me though that I’d perhaps mis-read – or not read – my wife on the issue. Yes, I believed autism allowed her to dial down the intensity of desiring a second child. Yes, I witnessed her brilliance with Isaac and love for him, making a mockery of any mothering doubts she’d possessed. Yes, she had confronted Isaac’s birth and was dealing with the demons.

But behind our professing peace with having one child, had she really let go? Somehow I had assumed that, like me, she had. The risk of another child with autism was too great. Surely she agreed?


Confronting it not out of the blue, but certainly unexpectedly, I think I’d got things a little wrong. She welcomed the conversation. All conversation in fact.  Indeed, back to that torrent of autism truths, one that’s particularly torrid is how many parents of children with autism split up. 7 out of ten. I by no means feel threatened by that, but it’s a useful tool to remind myself that where autism is concerned, transparent and honest discussion is encouraged at all times.


My concerns were now all centred on the not so solid stat (some say higher, others lower) of likelihood of autism in a sibling. She countered me at every turn.

Autism is a spectrum. Children with autism are as individual from each other as children without it are. So if a sibling does have autism, he or she will be different from Isaac.

Indeed, Isaac, as my wife puts it, now comes with his own instruction manual. We know how to handle him, what pushes his buttons, makes him happy, sad, calm, whatever. That manual won’t be applicable if we were to have another child with autism; it definitely won’t if we have a child without.

What about the stress of seeking signs that a sibling would have autism? Yes, she agreed, that would be something to watch for. But it’s totally and utterly out of our control and the likelihood is incredibly low. Remain strong. If something is out of sorts, seek help. So much strain with Isaac was because we didn’t know. Should these challenges repeat themselves with another, we will be equipped to a certain degree.  

Seemingly swiftly, but actually deliberately and methodically, she had confronted the second child issues, the probabilities and problems, and emerged confident and content.
I was flummoxed. If she could accept the risk, I surely could too. What was stopping us?

Isaac knows there’s a baby in mummy’s tummy. He processed the information early on. Processed as opposed to comprehended. Even with the baby weeks away, what he really understands I’m not sure. However, his loving, caring behaviour with a baby nephew is reassuring.


The baby’s called Paul Isaac tells us, even though it’s a girl. A girl is statistically less likely to have autism, but more likely to be underdiagnosed. More information that is baffling and not enormously helpful.
I worry that when the baby cries Isaac will be upset because that’s how his mind works. I don’t fear jealousy or vying for attention though because that’s not really in his nature.  

What I do know is that as a unit we are prepared as well as we can be. Which means, above and beyond, sticking to the rigid routine for Isaac and not swaying from it. Now, when the baby’s born, and beyond. To always appreciate his autism, so he and we can cope.
Maybe that’s what enabled us to eventually entertain the possibility of a second child. An awareness of Isaac’s autism not a fear of a sibling having it.

Leave a Comment

22 comments:

  1. Your blogs are an inspiration and education to those of us with and without children with autism. Everything will be different with your new baby because every baby is different. Isaac will no doubt adore your new family member in his own way, as will you and your wife. Keep up the blogs, they're amazing, emotional, honest and interesting.

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  2. Well done, mate - another great, honest and moving piece of writing. Although we are the other side of the world - we are with you in spirit every step of the way.

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    1. Thank you from this side of the world; means a lot. x

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  3. Congratulations on your parenting skills. I know a couple who have a perfect little girl; when I say perfect, I mean: when she was one-year-old she couldn't walk well, but she knew where her things were and understood everything, she said her first sentence (grandma, a man had a hat on) when she was 18 months old, at the age of two she could sing a whole song on her own with all the movements she learned, now that she's three she can make up songs, remember every conversation she heard, she can't read, but she can pretend to read and makes up the words as her little finger slides down a page, she has a bit of a temper (she inherited this from her grandmother) that hits and leaves within seconds, she's friendly, chatty, it's easy to explain things to her - in short, every parent's dream. There are some issues, esp with food, but nothing big. Yet her parents still struggle. Hence, I am amazed at your parenting skills. I believe you have a talent there. Wow...

    I think you did the world a favour by having another child and I wish you all the best for the future.

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    1. Thank you so much. We certainly do struggle at times. But knowledge is power with autism I feel. And only now do we feel brave enough to have a second.
      I wish you all the best too.
      Matt

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  4. Amazing - so thought-provoking, profound, inspiring, and beautifully written.

    Mum and Dad

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  5. Excellent, thanks.

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  6. Every time I read one of your posts I am full of admiration for your insight and love for your son. My son has autism and is 18 now. We struggled with the same dilemmas as you. Your experience of siblings will be unique, but may be non the worse for that. My 2 children are so different that they securely occupy different places in the family without ever showing the dreaded sibling rivalry and they are devoted to each other in a way teenagers usually scorn. The one who does not have autism has gained a deep seated respect for the worth in people who are different and has the most joyously eclectic group of friends. My son has taught and learned from his sibling from the day they met. A big bribe present 'from the baby' helped!

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    1. I loved reading this. Hearing positive experiences from people who have been in similar situations is reassuring; and gives me huge hope. So thank you! Matt

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  7. Matt, you have moved me to tears. I hope your sister and my friend Charlotte carries on posting these. I hope that your little girl brings joy to all your family, including Isaac.

    Amanda

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    1. Thanks, Amanda. Lovely to hear froma friend of Cha's. She's an amazing aunt. x

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  8. Just to say how I understood every word of the piece in Style today. I have an 18 year old son who is totally into his train trips. They are planned with detail and discussed on a month by month rolling basis. Each time one month is over the list is ticked off and we plan the next one! He takes a small digital camera with him and downloads and files them on his computer. He gets as much enjoyment from watching them back as the journeys themselves and has a complete photographic memory of the date of each trip... good luck with your baby too.

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    1. Thank you for sharing this. So wonderful. And I love that he takes such pleasure in the whole train trip experience. It is a glimpse, possibly, into how Isaac will be. As his abilities develop I can imagine him downloading and filing too.
      Matt

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  9. This is the first time i have read your blog.Our first baby was stillborn,our second was fine but I had a similar experience to your wife.The delivery was awful,forceps,cuts,stitches etc.This is many years ago when husbands were not allowed in the delivery room.Our third just popped out.A very quick and easy delivery.I'm sure it will be a different experience this time for your wife.You have both done an amazing job with Isaac and must feel so proud.

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    1. Thank you so much for sharing your experiences.

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  10. Hi there!

    I've just stumbled upon your blog via a RT on twitter - I can't tell you how much I emphasise with this particular post (I've not got around to reading anything else yet!)

    Our daughter turned 3 a few weeks ago, and she's currently being assessed for autism.

    This post so accurately explains how I feel about having another child, and the pressure to do so, and the reasons why I personally, at this time, just can't do it.

    All my friends and family are happily on to their second child, whereas I feel like I already have 2 to look after! ;)

    When I gave birth to our daughter it was so long-winded - being in labour, but not "properly" for almost 4 whole days. Then being induced to nightmarish levels, being drugged with every pain relief they had… until I saw that dreaded table of implements appear, being wheeled-in quietly by the midwife.

    Through my drug-enduced haze I managed to twig the table of tools, and I suddenly realised I needed to get my daughter out as soon as possible. I was lucky to be granted that solitary moment of lucidity, else I know both my daughter and I would've had to suffer a birth similar to that of your wife and son.

    I can't tell you how many times we questioned our ability as parents over the past three years. "It's not supposed to be this hard, surely?!" I have asked myself many a time. That was in the early days, because by the time our daughter was 18 months old I knew that she wasn't functioning quite as we were expecting.

    She's a whirlwind of joy and song most of the time, and we love her intensely, but of course it is been a difficult journey so far.

    I understand the statistic about parents of autistic children splitting up, and like you, took this as proof that we are having a more demanding experience than other parents, and thus, must always remember exactly why we're getting so angry at each other. It's mostly absolute exhaustion because our daughter thinks 3am is a perfectly acceptable time to get up and want us to read books, or make her breakfast as she stomps loudly around our underlay-less house!

    Our daughter also has no communication skills right now, other than dragging us by the hand to her desired object. Because she doesn't talk (well, doesn't use words for communication) or even point, she has spent a lot of her time screaming at us, and this has also caused a lot of stress in our relationship.

    When I see those around me having a second child, those that have complained how difficult parenthood has been for them, it makes me seethe. I feel terrible for feeling like that, but it is the truth.

    Not only I am worried that our next child could be autistic (I wonder if statistically having an autistic girl will raise the chances of having another child with autism?), but I highly doubt we could manage to care for another child on top of caring for our daughter. Even if the child developed without problem, it would be impossible in my eyes. If our second child did have autism, well, I highly doubt we would remain sane going through all this again (although perhaps, it might be easier given our experience!).

    I just have to break my flow here, because my partner came downstairs and I showed him your blog. I started reading this post to aloud to him:
    http://www.mysonisaac.blogspot.co.uk/2012/11/not-knowing-which-way-to-turn.html

    "On this fairly horrific occasion, when Isaac’s tear-fuelled plea to explain his despair didn’t work, he forcefully threw himself at me like a wild wrestler, in the cross fire knocking over a little girl. The stare a mother gave me that day will stay with me forever; a look of confused shock that a little boy could be so repulsive and his father so wretched."

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  11. I didn't get to read the last 4 words, because I burst out crying. You so succinctly express how I have felt on so many occasions with my daughter. My daughter isn't naughty, she just can't communicate properly. In shopping centres, on buses, once on a train across country - her explosive "tantrums" only capture the attention of onlookers, their eyes burn into us with judgement, and it kills me.

    Once in our local shopping centre, my daughter was apoplectic. This was when she was about 18months-2 years old. I was cradling her in my arms, more restraining her, just saying loud enough to appease those rude enough to stare "what's wrong sweetie? - it's ok" over and over, as she hit out at me, and flailed around like a fish out of water.

    I could feel people staring so intensely, I almost had a moment of psychic ability, as I could hear their thoughts "what a naughty child!" "why doesn't she tell her off?!"

    But I knew by that point in my parental experience that "telling her off" would do absolutely nothing to calm the situation. I had to sit this explosive tantrum out until … well, as I now know, until I sing.

    Music calms my daughter so much, and it is an everyday tool in helping her cope with life.

    Well, I've stopped crying now and I am just happy to have found your blog. I am sorry if I've gone on with myself, but I don't have many people to talk to about this subject. Everyone around me (family) is in denial about our daughter's issues, and I simply can't discuss any problems without myself being "labelled" as "negative".

    My father in law doesn't even know any of these assessments are taking place, for example. He just thinks our daughter is aloof and slow to speak…

    Sorry again.

    I wish you infinite luck and happiness for the birth of your daughter. Thank you for writing this blog.

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    1. I am so incredibly moved by your brave words. Thank you hugely for sharing them. So much chimes with me. I wish you all the very best for you and your wonderful daughter with all my heart.

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  12. Thank you to everybody who has made a comment. Overwhelmed and moved by all the feedback. So appreciated.
    Matt

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  13. Oh Matthew have been feeling so full of empathy for even though don't have an autistic child. I have spent 15 years working in schools with autistic children and have set up many induction programmes for children who have failed in other schools. What incredibly hard work for all concerned. I always felt so full of admiration for parents whose children have just about managed to hold it at school, but who then could no longer at home. I expect you have heard about, if not already used, social stories, a wonderful and helpful technique for trying new things or working out how to behave in certain situations.
    Keep up your fantastic and informed approach with Isaac - he is a lucky boy to have you both. My very best wishes for your new baby.

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    1. I really appreciate feedback from professionals... Thank you. Social stories is something we try with Isaac... They may be vital with the new arrival! Thanks for your sympathetic words.

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  14. Hi Matthew.

    After I discovered your blog last month, I resolved to get in touch to share my own experiences of autism with you. I discovered your blog after googling "Isaac autism", and the reason I used those search terms is my own son Isaac, who is 10 years old and profoundly autistic.

    On reading your blog, I was struck by some of the thinking-out-loud reflections you have captured so compellingly. I was also moved by much of what you said, and you've done a superb job of setting out the concerns and fears held by parents of children with autism.

    I just read the entry where you talk about the possibility of having another child. If you always wanted more than one child, and have any interest in taking advice - I'd urge you to go for it.

    Isaac was our second child and after we got his diagnosis (he was just two) life changed forever. We still wonder if we would have had any other children if Isaac had been born first.

    I'm so glad autism didn't dictate our family set up. Isaac was our second baby, born two years after his brother, Michael. Isaac was then followed two years later by Daniel, and after a 6 year gap, we were surprised and (eventually) delighted to learn we were having another baby - this turned out to be a girl we named Sara. The family is definitely complete.

    Our Isaac has very limited communication ability, and can say only a few words. He also suffers terrible bouts of inconsolable melancholy, and goes through phases where he is angry and sad. There were times when I couldn't see how we could continue and just wanted to run away. Thankfully, the good times massively outweigh the bad, and life is generally a lot more relaxed these days with the autism now a part of family life.

    One day at a time works well for me, and I don't worry about the future for Isaac or for us. I probably should, but it takes a lot of effort and achieves nothing.

    Anyway, I'm happy I found your blog, and I want to wish you and your family all the very best that life has to offer.

    Thanks for the blog and keep up the good work.

    Gerry

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