Screen Time

Too much screen time will harm your child’s development. I have heard this from more than one professional. They usually add, that although this is true for any child, it is especially the case for autistic children. I agree. In fact, I am constantly trying to find the most effective way to limit screen time for the whole household. The biggest obstacle to that good intention is that a screen equals a peaceful and sometimes blissfully happy child. When you’re used to seeing your child upset for long periods of time,and when you are emotionally drained after navigating a distress-a-thon,  it can be particularly hard to resist. I would heartily recommend a screen free hour before bed. The initial hardship surprised me, but when bedtime suddenly became so much easier it was not very hard at all.

A few years ago I had a lesson in what screen time does your brain. My daughter has seizures and was admitted to hospital for tests. She was hooked up to a machine that measured her brain activity. It was displayed on a monitor at the end of her bed, in real time. It was fascinating to watch the readout change depending on what she was doing. When she noticed someone come into the room there was a burst of activity on the monitor.  When it was someone she knew well the activity was more pronounced. Conversations produced an active, wiggly line. Singing made the graph so thick with lines they looked like blocks. Laughter took the line to a high peak. When she turned to watch the TV however, the lines indicating brain activity immediately flatlined. It would happen even if she just glanced at the TV for a few seconds in the middle if a conversation. A similar effect when she looked at a laptop screen. After seeing that I wanted to never watch TV again. Certainly I didn’t want to let my children watch TV anymore. I did though.

I have always loved TV, I even like to have it on just as company, I find it reassuring. I love to be completely absorbed in a drama series, to find new comedy, and I have learnt a lot from TV. I thought Science was boring and that Maths was irrelevant until TV brought them to life for me. I do love it a little less now, and I make it more of a conscious decision to watch rather than an automatic habit.

Leo seems to have inherited, or learnt, my love of TV. From four months old he couldn’t take his eyes off it, and I reassured myself with the thought that it was just colours and lights to him, and he wasn’t actually watching it and therefore it wasn’t doing any harm. I was probably wrong, and I probably knew it too.

But Leo has learnt things from TV too. Tree Fu Tom taught him to jump. It is a very irritating but well-intentioned show that tries to get kids to move as they watch. For Leo it did more than that. All the other kids his age could already jump but Leo , who has great trouble with copying any movement was still struggling to co-ordinate the move. We tried to teach him and he got more and more annoyed with us and himself. Then one day Tree Fu Tom said jump and he jumped.

That brings me to another concern about screens; that they make children (and adults) sedentary. And on follow all the things that a sedentary life brings. Autistic kids have enough challenges without that on top. Leo however, tends to watch TV ‘on the move’. He runs in circles and jumps up and down (now that he can) and is generally very active. So I am able to let myself off the hook on that one, to some extent at least. More worrying for me is that it is a time thief. What could we have done instead of watching TV? Most of the time, almost anything would be better.

So, given my ongoing battle to limit screen time, it was an interesting decision to buy my autistic son an iPad for his third birthday. Well, we decided on an iPad, it could be any tablet device thing. I sometimes regret it, and I definitely regret installing a YouTube app, but I think the benefit/detriment balance is at least even. No doubt there are professionals who would disagree. There are days when I disagree with myself.

The biggest positive that the iPad has given me is the knowledge that my son is not developmentally delayed. Officially he still is, but I know it’s not true. Within days of having the ipad he was performing tasks he struggled to do in 1:1 sessions. He was following complex instructions, completing puzzles and identifying words with ease. I would watch over his shoulder, expecting to have to help him out, only to find him moving on to the next thing. I don’t know if it is the removal of social demands from the equation that makes it easier, or if he finds the screen so compelling he is able to concentrate without being distracted. It all started to fall into place for me:He understands, But he finds it hard to concentrate, to stay on task. This technology can help him to do that, but more than that it has changed my attitude towards him. I no longer question his potential to learn, even on bad days.

It has also helped me to see areas where he does struggle. Putting things into categories was hard. playing ‘spot the difference’ is still a challenge. Using a screen to try to learn those new things is so much better for him. He is just more open to trying things and making mistakes without so much distress.

It is a useful tool to help him cope in situations where he would otherwise not cope, usually very noisily. We sometimes get disapproving looks, such a young child with his head stuck in a device. But we would get them if he was screaming his head off too (the older a child get the less acceptable it is for them to publicly not cope). I try very hard not to just hand him the iPad if I’m worried he won’t cope. It is important I think, to wait and see what happens. I don’t want him to miss experiences because I assumed it was too much.

It also helps him to wind down after too much input. After school is prime iPad time. Sometimes he is on it too long. And the longer he is on it, the more resistant he is to doing other things, and harder it is for me to take it away from him. And I need to keep an eye on myself, as it is easy for me to justify it in terms of him needing it to wind down. Whereas, in fact maybe It is me who has a need for him to be occupied  so that I have time to cook dinner or tidy up in peace. Or I just want the peace.

It has helped him to share things with us. He wants to show me things on the iPad. Not often, but it happens more with the iPad than any other context.

Until recently we also had a communication app installed. It has only been uninstalled as he will soon be getting a dedicated communication device with voice output. It is quite different to the app, so we don’t want him getting too used to the app, which was designed for learning disabled adults rather than autistic children.

During the time we did have it, I had some quite mundane and yet extraordinary ‘conversations’ with my non-speaking son. He woke up one night and was able to tell me that he felt scared and that he was scared of a monster. Every morning I asked him how he was, and using the icons on the screen he would tell me how he felt. Nine times out of ten the answer was ‘happy’, but one morning the answer, was ‘cold’ and he went on to say he wanted to wear his dressing gown. We looked at the hobbies page and he told me that his hobbies were reading books, watching films, running, cooking and fishing. This last one made me cry. He seems so unaware at times, ‘in his own little world’. Fishing is his Dad’s hobby, and it made me realise he wants to be like his Dad, even though at the time he was practically ignoring him. But he just wanted to do and be the same as his dad, just like any three year old. The insight was bittersweet, as it made me realise that I didn’t really know him that well.

Now, the YouTube app. I have fewer nice things to say about this. I should remove it, but it’s like Pandora’s box. The evil has now entered the world and I can’t get it back in. He goes through phases where he returns to his educational apps, but currently his first choice is watching the weirdest things he can find, involving as many of his special interests as possible. There is a whole world out there of people opening toys on camera, filming not very good stories using a bizarre mixture of toys. And covering everything in playdough. The best thing I can say about it is that it has been interesting to me to see what he finds interesting. With no speech he has only limited opportunities to tell me what he likes and doesn’t like. The exact point where he gets bored of something is fascinating. But I’m pretty sure his brain waves are flatlining throughout most of this. And then sometimes I’m not so sure. Seeing him recreate and elaborate on some of the scenes he has watched on YouTube makes me wonder if it is doing more good than I give it credit for.  Sounds like not very much, but for a child who finds copying so hard it is very much indeed.

So the fairly predictable conclusion is that screen time is like most things, it can be good in moderation. But how you find the exact balance that suits your own child is not so predictable. There are perhaps more benefits and more dangers for autistic kids – everything always seems to be ‘more’ for autistic kids.

I don’t want to downplay the potential for harm – I have too clear a memory of that brainwave flatline for that. But, it would also have been harmful for me to continue to assume my son was less capable than he really is. It was not just devices and screen time that made me realise that, but they played a pivotal role. And will continue to do so. Apart from the hour before bedtime.

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What helps. What doesn’t.

Aside

My son is autistic. I embrace thatand I also want to help him live more comfortably in the world. There is not any one answer to how I will do that, but at least I know what my intentions are. I also know that I need to presume competence, which is not the same thing as having high expectations. It took me some time to understand what it is and why it matters. I still have some trouble explaining it, but here goes….It is knowing that the fact that Leo is autistic makes it more difficult to assess what he understands. He may well understand things that he appears not to – but for a variety of reasons he is not currently able to show this in ways that we can understand. In a way, that is what autism is all about. Expressing yourself is hard. It does not mean that you have nothing to express.

It was not an easy journey to get to that point. I thought autism sounded like something you would fight and overcome, rather than embrace. Acceptance is the only choice for me.  If Leo were to consistently receive the message that I was trying to change him, that he is not okay the way he is…that could resonate throughout his life. It is also much more pleasant for both us on a day-to-day basis. Acceptance is not a call to inaction. It is simply a starting point for working with Leo so he can find his way in the world.

But he also has another diagnosis: 16p11.2 microdeletion. The numbers refer to the place on chromosome 16 where genetic material is missing. This can be passed on from a parent or it can happen randomly. The diagnosis is in addition to autism, and this can be confusing, as when I try to explain it, it can sound as if it is part of it the autism diagnosis, or the cause of it.

Rather than a list of symptoms you get a list of risks. Most of them will not be experienced by people with the microdeletion, but compared to the average person they will have a much higher chance of having one or more of the things on the list. It gives you some statistics, but as the abnormality was only discovered in 2007 there is not a lot of data to go on. I try not to take too much notice of the numbers in any case; they don’t tell you anything about your child. The list includes but is not limited to: speech delay, fine and gross motor delays, obesity, autism, low IQ, hyperactivity, aggression, seizures, schizophrenia. Some people are entirely unaffected. Another way to explain it would be to say that being male does not cause autism, but it does give you a greater chance of being autistic, or indeed having special needs (go to any special needs school and observe the boy:girl ratio). This is the same principle. Association rather than causation.

I find Leo’s microdeletion harder to talk/think/write about than him being autistic. There are no positive sides to it. After embracing autism and presuming competence it all became harder again.  The best I could do was a vague link between undergoing adversity and growing stronger. Sitting with, tolerating and investigating those uncomfortable feelings has helped a little.

They tested us, Leo’s parents (if our results were clear then no need to test our other children). We waited months and months for our results. I have a suspicion that they were sitting in someone’s in-tray for some time, as a chasing phone call prompted a return call from the doctor. Our results were clear. This means none of the other children need testing – they are no more likely to have the microdeletion than any other person. This is clearly a good thing, but I was struck how I felt no relief when the doctor said the words, or even later on. I even felt a little sadness creeping in. The bit of me that wanted to say to Leo you have this unusual thing but it’s okay because I have it too was making itself known. I hadn’t realised it even existed until the results were in. I knew I was not concerned about blame or guilt, but I was not fully aware of the part of me that was holding onto a kind of hope that I could make it all okay for him by the two of us being in it together.

The period of waiting revealed an interesting phenomenon. I started to find signs of 16p11.2 in my other children and in myself: Caitlin has seizures, James had speech delay. Caitlin had great difficulty learning to ride a bike – was that due to motor delays? Miles did not roll over until he was 8 months old. I am excessively clumsy. Is there a pattern of problems with motor skills?

There are also some facial features associated with the syndrome and that list really drew my attention during the waiting period. They are so subtle, and within the range of features that you might find in anyone. They don’t scream out at you, they are almost nothing, and if you keep looking you can convince yourself you have found them. Large head, wide-spaced eyes, long philtrum (the space that connects the nose and the upper lip – think John Major). Low set ears, tiny folds in the corners of the eyes. Leo has these features (apart from the low-set ears). I noticed the long philtrum when he was born and I thought it strange as it didn’t seem to be in either of our families. Even stranger, it seems to have shortened over time and is less noticeable now. Caitlin has beautiful almond-shaped eyes. Do they have that shape because of tiny folds in the corners? I have a large head. Does James have low-set ears? I even started to look at strangers, at people on television. The features were everywhere, and search continued even after it lost all meaning.

The results put an end to the search for good, but it did remind me of the fact that you very often see what you expect to see. And that means you stop actually seeing. You start telling yourself a story about what you think you see, and you think you are understanding it. And then you’re off ‘making sense’ of what you have seen and putting the pieces together and yes it all fits…except it doesn’t and it is nothing more than a story.

Caitlin, uses a wheelchair, and most of the time she wheels herself, but sometimes her partner will push the wheelchair while she holds their baby. She has had people come up to her, eager to share what they think is an amusing mistake. I thought you were holding a doll they exclaim, I didn’t realise it was a real baby! What they don’t realise, not at the time anyway, is they have just shared  their assumptions about a girl in a wheelchair: she won’t have a relationship, or a family of her own. It is far more likely that at the age of 20 she would still be playing with dolls, so that is what they see.

I wonder how many assumptions are made about Leo and children like him. Some assumptions are made by people who do not know about his diagnosis: the lady who stared at him during meltdown in the doctor’s surgery did not say anything, but it was pretty clear some assumptions were being made. But there are also assumptions made by people who do know his diagnosis; his notes continue to say that Leo’s play is limited and repetitive when in my opinion it is not. He is developmentally delayed and this must affect the assumptions of the professionals involved. When the pre-school manager told me he can recognise the numbers 1-3, I could tell she expected me to be as pleased and surprised as she was. The thing is, he knows numbers up to 20. And the alphabet, the names and sounds of the letters. And a few words too. I tell people this, but it seems they do not hear, as it does not fit the picture they have built up of a child who is delayed in all areas.

I wonder how many assumptions I make without realising. Of course, that is the problem with assumptions – you do not realise you are making them! I sometimes find I have assumed that he has not understood something that in fact he has.  I wonder every day about how best to counter this tendency. Knowing it is there is the first step. Slowing down is the second. The mind is so quick to take over and run off with itself. It is much harder to watch and wait without judging. The third is replacing anxiety (mainly about the future) with curiosity about what will happen in this moment. All of this creates the conditions in which it becomes easy to presume competence.

A possible fourth way (I am hesitating about including it) is to stop comparing him to other children. I hesitate because the way I do this at the moment is to largely ignore other children. This is not sustainable, not least because I have my own example of what is (at least it appears to be at this point) typical development in my own 15 month old. It is worth pointing out that in my distress at how far behind he is ( at the age of 41 months he is currently assessed as 16-26 months in all areas) I can end up making assumptions about other children. Another boy called Leo who we met when we used to go to mother and toddler groups caused me to be envious of the ease with which I presumed he would breeze through life. We next met him at an autism group, newly diagnosed.

Still, for the most part, I know other children have the potential to upset me, and I live in a bubble, observing other children only briefly, out of the corner of my eye. If I can find a way to simply observe without judging, I might even make useful discoveries. Other children are much more relaxed than Leo, whose muscles are often tensed. I get used to the way he is, but when I see him next to other kids, it is as if he is braced against life. It is hard to learn when you are that tense. This is useful information and could have gone unnoticed. Nevertheless, it is often hard for me to look, simply because my mind will start running away with comparisons, worry kicks in, and it stops being helpful.

It is a process. You become distracted with other things, and assumptions, anxiety and judgment and grow everywhere like weeds.  You simply need to clear them away and start again. Like weeding, and most chores, it is not something you do once and then it is done. The weeds come back, but the more you attend to it, the less of a chore it becomes.

Labelling Leo

Mum reports he is very much a loner and sometimes looks at other children. That is the second sentence of Leo’s latest letter from the Child Development Centre. It took me a moment to realise where that came from: the paediatrician had asked me if my son plays with other children. I said that no he didn’t, but that sometimes he will glance at them if they are doing something that interests him. That exchange is now recorded as me calling my son a loner. The topic of inaccurate medical letters is probably worth a whole post to itself, so I will gloss over that for now. What really struck me was that a paediatrician was willing to label a child, not yet 3 years old a ‘loner’. I am fairly sure that it was intended as a neutral description of behaviour, but I think that as well as being slightly ridiculous, the term carries a judgment with it. In any case I was disappointed, as I had opened the letter, hoping it would contain the diagnosis, but it was simply a description of the appointment. I even recognised some of it.

So we are still waiting for the autism label. I know it is coming, but I don’t know what form it will take: Autism, Classic Autism, Kanner’s Autism, Autism Spectrum Disorder, Autistic Spectrum Condition, Autistic Traits, Autistic. Those are the main possibilities. There is not much difference between them. Less likely is the catchy PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), apparently rarely used in the UK. Will the diagnosis arrive with another label attached: mild, severe, moderate? High or low functioning? I do hope not. To me those are not just labels, but predictions about the future that no-one is qualified to make. A lot of people seem to be anti-label, but I don’t have a problem with the label itself. Labels are everywhere, and they are useful for giving us information about things! Male, female, employee, retired, overweight, confident, depressed, successful. Some labels do create an automatic impression in the mind of the person hearing them. And to the label-haters, I concede that can be a problem. Without understanding, I agree the label is not very helpful. Many people will have their own ideas about what autism is, and they may not bear much relation to Leo at all.

I am ashamed to say that pre-Leo I had got the impression that to be given a diagnosis of autism was to be declared virtually an empty shell, someone who cares about things, not people, someone trapped in a world devoid of emotion who needs to be helped (dragged?) into the ‘real world’. I can’t be sure, but I think these views may have been planted in my mind around the time of the MMR scare, when it first broke in 1998 (don’t worry I am not going to discuss vaccinations). The way it was reported, or at least the way I interpreted it, was that for your child to ‘get’ autism was amongst the most terrible things that could happen to them, that it was akin to losing them. I took that message on board and never had cause to question it until this amazing little man landed in my life. I hope I underestimate people. In the last couple of months I have flinched on three separate occasions, on hearing the word ‘autistic’ used on TV for comic effect. These were funny shows, shows I like. I completely get that they were using the word to describe people who were not actually autistic and that they were not making fun of autistic people. But I wish they would find another word. It was being used as shorthand for all the misconceptions listed above.

When you hear someone is a mother, it tells you a bit about that person’s experiences, but you would probably be aware that it doesn’t tell you much about the person herself. You don’t expect her to necessarily be like other mothers you know, or a mother you saw depicted on TV. When you hear that someone is autistic it really only gives you about that level of information. Yes, there is common ground but many, many variations and differences too.

I had to fight my own anti-label feelings when my daughter started identifying herself as disabled. She was a novice wheelchair-user and had gone from having an invisible disability (Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome) to being visibly disabled. People respected and believed the wheelchair, and I think she was relieved at not only regaining her mobility and independence, but at not having to explain her condition, not having to explain why she couldn’t do things. I could see she was happier, but it was some time before I felt comfortable with any of that.I insisted it was a short-term solution. I worried that when I told people my daughter had chronic pain and fatigue, that she used a wheelchair, that she had to leave college due to the severity of her condition, that this would conjure up an image of a timid mousey girl. Perhaps she was even sitting alone in the corner, the passive recipient of the goodwill of others. The reality was hilariously different; vibrant, confident, opinionated and extremely sociable. I would sometimes see people change their attitude mid-sentence. I think attitudes to physical disabilities have moved on, even in the four years she has been a wheelchair-user. I am not sure the same has happened for autism yet. The problem is sometimes that people don’t know, and sometimes it is that they think they do. The sensory differences, the processing difficulties, the motor planning issues, these things are now the backdrop our daily life, but eight months ago they were revelations. A year ago they were not even on the edges of my awareness. How much does the average person know about these things? How interested are they?

So why am I so keen to get the label? Well, the outside world and the people in it are going to be Leo’s biggest challenge. When you are a child, your first dealings with the outside world come through school. School almost seems to have been designed to create the perfect storm in many autistic kids, and he will need support to help him navigate his way through it all. The label is the first step towards ensuring that support. So far he has been provided him with a fantastic one to one person at pre-school. They understand that cognitively he may be just about keeping up with his peers, and his fascination with numbers and letters means that in some ways he is a little ahead, but emotionally he is still a baby. Around 17 months is probably about right. So when it is time for indoor activities, but Leo wants to go outside, he can. When it is circle time he does not have to sit with the other children. I am still learning to think things through, and when I first heard this I worried that he would get used to getting his own way. I soon realised this is just the appropriate accommodation for his challenges, in the same way that a wheelchair ramp is the appropriate accommodation for his sister. Later on, his accommodations may be a quiet room he can go to during break times, a safe place to eat lunch. He may need a Teaching Assistant with him in lessons. He may need a different environment altogether. Special School. Homeschooling. He may need none of these. I don’t know.

Without the autism label he would get another label: badly-behaved child, maybe spoiled brat. That reminds me of a discussion I had recently about ‘children today’. Someone was telling me they had read in the paper about children who start school not able talk, not even knowing their names. Some of them even in nappies. This person knew my son was autistic, but I pointed it out anyway and suggested (pleasantly) that maybe at least some of these children had undiagnosed autism, or other developmental delays. This was rejected, as the person had a teacher friend who had confirmed that all this was true. The discussion then turned to Disability Benefits and how some people (like my son) deserve them, but that some people (other people) get them just because their child has tantrums and is badly-behaved. I explained (only slightly less pleasantly) that these children may also be autistic. I wonder how widespread those kind of views are. In those circumstances a label might be of help, even if it is not completely understood.

I have only just started learning about autism, and learning to embrace it is even newer. I make mistakes in the labels I use. I don’t want to think about the future, or I think about the future too much. Some days I devour the writings of autistic adults, some days it is too painful to read about how hard life on the spectrum can be. At other times I think about the past; when Leo had just ‘passed’ his 10 month check-up and we would  have silly, self-indulgent discussions about what he would become. I even have days (less frequently now) when I wonder if we have got it right. I might see him doing pretend play sequences (for that is what they call brushing teddy’s hair and feeding him), and think well he’s not supposed to do that, maybe it’s all a mistake.  But that is another reason why we need the label. It stops me living too much in the past or the future, and brings me back to where we are now. Strangely, although the future can make me feel scared and the past can make me feel sad, in the present everything feels just fine.

inappropriate noises

A lot of parents of autistic children find they are not listened to when they first raise concerns about their child’s development.  Others are in denial, and that was me. Denial is very tiring as all your energy goes into proving through the medium of everyday life that your child is not autistic. It is just as exhausting on the other side, but it feels more like an invigorating run through interesting terrain rather than an endless trudge through a desolate landscape. I feel the journey has actually only taken me to the start line (we are still waiting for diagnosis), but what better place to start?

I’ve never seen a baby so engaged with the world. Apparently this was my sister’s impression as told to my mum after seeing my son Leo at around 8 months old. My sister plus kids were on a brief visit to my parents’ house and when we arrived the kids were engaged in a puzzle-fest.  I plonked Leo in the middle of it all, and to my amazement he didn’t pause for a second, but clocked what was going on and got to work with the puzzle pieces. Ok, so he was putting them in the wrong places but the point is he had worked out the game and was joining in.

People are more likely to say that an autistic child seems locked in their own world rather than engaged with it, but when I look back I can see that he was engaged with the objects rather than the people, but hey objects are part of the world too, someone has to pay attention to the objects. Someone has to watch the wheels go round and see if they can work out a way for them to go faster or better. Having said that, I also remember a baby who would love looking at you, with one of the biggest smiles I have ever seen. I used to think it must hurt his mouth to smile that hard.  His eye contact was frequent and natural  and his 10 month check-up was textbook.

When your child regresses it inevitably feels like something has gone wrong (or more likely that you have done something wrong as a parent). Leo’s dad has even asked if someone dropped him on his head. Indeed not, but nevertheless, the search for explanations is as irresistible as it is unhelpful . Leo’s early childhood was somewhat unsettled and as an explanation for some of his behaviour it was pretty near perfect. He was a surprise baby and we had not yet managed to sort out our living arrangements. We had to go from my cramped house to his Daddy’s cramped flat every weekend. Daddy visiting every night then leaving after dinner. Endless house-hunting. No wonder he ignored daddy or turned away and didn’t wave goodbye.  I found it stressful enough, and I was 38.

My sister had also sent me a text soon after Leo was born saying amongst other things that she expected Leo would be very clever. I remember thinking I really don’t mind if he is, I just want him to be happy. I had read a lot of parenting books that eschewed strict routine, the naughty step and star charts. Co-sleeping, boundaries rather than punishments, saying yes when possible: I was revelling in motherhood this time (third) around, not worrying about milestones or whether my child was ‘advanced for his age’. As long as my son was securely attached everything else would fall into place. I had a kind of pure and joyful belief in that. You don’t need to teach them anything: Children are designed to grow and develop – just provide them with the opportunities and all will be well. I still don’t think there’s anything particularly wrong with that view, but  I do wonder if it meant I was slow to notice things that were different.

As I say, I wasn’t worried about Leo being ‘clever’. I was considered a clever child and it never really did me any good. But I did think he was slower than my other children to pick up certain things. Waving was the first one I noticed. When Leo was about to hit 10 months I told his dad he will start waving soon, it is so cute when they do that. But he didn’t. 11, 12 months came and went and still nothing. It was 15 months when he finally got it – and he used it mainly for telling me that he wanted to leave a place or stop an activity. How clever I thought.

When I tell the story of Leo I tend to tell it in terms of his regression. It is far from the whole story but there is a good deal of truth in it, so it bears retelling here. He was ‘normal’ until 13 months when he had an ear infection. He had been an enthusiastic babbler, correct intonation and some ‘nearly words’: ‘car?’ ‘cat?’ ‘book?’.  Now he was  crying all the time and avoiding eye contact.  I spent many weeks (months?) saying there is something wrong with his ears. I wasn’t being defensive, I really believed it.  His sister has hearing loss and Leo’s ears were found to be stuffed with wax. It all made such sense. Congenital hearing loss, glue ear or just wax – yeah one of those! No wonder he wasn’t talking (or making any noise apart from crying). How that had stopped him clapping or why it made him scream every single time we went in the supermarket I don’t know. When we went shopping people used to come up and ask me what the matter was (in a nice way). Is he teething, does he need a nap? I used to say: he doesn’t like shopping. The concerned person would laugh and say typical boy. He started crying full volume the moment he realised we were heading towards the shop. This showed he really really didn’t like shopping. And of course that he was clever enough to realise where we are going. Which was indeed true.

When hearing tests were normal and his ears were cleared out with conscientious use of olive oil drops I was puzzled. Daddy wasn’t puzzled, he was worried. He’s very quiet said daddy. He used to chat away all the time. As the experienced mother to the first time dad I felt compelled to come up with an explanation. Children don’t develop in straight line. Sometimes they go backwards for a bit.  I can’t remember how happy I was with that particular explanation.

Luckily there were other events around this time which provided me with more explanations. I had an emergency operation and was quite down afterwards.I had to stop breast feeding him due to me taking strong painkillers. No wonder he was unsettled. He also had his MMR jab (I was not worried that this had caused autism but it  seemed to coincide with a pathological fear of anything vaguely medical, which made sense – the nice lady calls you into a little room and then stabs you with needles. Whenever I asked google it answered  with autism, but google didn’t know about all these other factors so I didn’t take much notice. That’s not true actually; I bought a book called something like ‘Does my child have autism?’ I threw it away when I couldn’t find the page that said no he doesn’t – phew.

One of the other hardest things was how I felt my memories of Leo had been destroyed. I actually felt like someone had spat all over the moments of which I was most fond. He wasn’t showing how quirky or cool or independent he was, he was showing he was autistic.  When we went to the park at 13 months he enjoyed the slide and would clap himself after sliding down. That was cute yes, but when at 14 months he suddenly wanted to spend more time collecting and examining leaves and stones than playing with the equipment I was utterly charmed and kind of proud too. He is an individual! He loves nature! He used to chuckle to himself as he walked along and I found it unspeakably gorgeous (only recently found out this is an autistic thing).  When he was 18 months we went to a water park thing with a paddling pool, lots of fountains and even more children. After a quick run around he started picking up stones, sticks, leaves, bits of rubbish and putting them in the shoots of water to see if they would be carried along with the water spouts or fall to the ground. It was not long before other (much older) children noticed what he was doing and started copying him. Wow – I was proud, what a little scientist. Only later did I think oh yeah, an autistic little scientist.    So what if he couldn’t point to his nose, he had more interesting things to think about. That was why when you gave him a toy he wouldn’t exactly play with it , but would turn it over and inspect it, try to take it to bits.  Science, engineering, whatever.  As I said, someone has to be interested in things: if everyone was socialising all the time nothing would ever get done. This was how I rationalised Leo’s behaviour when I realised it was a bit autistic –y.  I have almost gone full circle now. He absolutely is quirky and cool and independent like the little scientist he is. He doesn’t follow the crowd, and  good for him, that is who he is, why would I want to change that??  I would love him to learn to talk (hey I’m desperate for him to learn to talk) but I don’t want to destroy the scientist in him. And I don’t want to let that keenness to stop me enjoying  the strengths he already has. Whatever, the important thing is that I have reclaimed my memories.

I think the first thing I noticed was that he didn’t copy. It is hard to say what was actually the first thing as a lot of the signs I have spotted only with the benefit of hindsight. For example, after being early to smile he was late to laugh and there was not a lot of it. Whenever he smiled his grandma would say he has a lovely laugh doesn’t he? I would smile and say yes but inside I was saying he doesn’t really laugh. I wasn’t worried (really, I wasn’t but the inaccuracy annoyed me).

Anyway, back to copying.  We were at a music group for toddlers – it was noticeable how much more engaged the girls were than the boys, including Leo. He was around 17 months old, you can’t expect too much at that age can you? He copied an action to a song and seeing him do this made me realise how he didn’t do this at any other time, ever. As I was in denial mode at this point rather than seeing not copying as a sign I saw it as an explanation for his lack of speech and another example of his quirky personality.  It is interesting that it is this kind of thinking that now annoys me more than anything: people who say well all kids are like that sometimes.

It all snowballed from there. There was a kind of inevitability to it and I decided to stop fighting and roll with it. I remember the moment I said out loud I think Leo is autistic.  it felt like surrender rather than acceptance, but I got to work on that pretty fast.  Reading and researching and turning over the issues in my mind. At  first, I wanted to read what parents of autistic children had to say, autistic self- advocates did not really seem relevant. I was very very very wrong. They are at the very heart of what you need to help your child. I was puzzled by everyone going on about sensory issues as Leo did not seem to have any. I was wrong again, he has loads. I still get it wrong. I decided he was ready to try ‘Rhyme Time’ at the Children’s Centre. Last time he barricaded himself under the table and did a big poo so I should have known better. This time I knew within two minutes it was not going to work, and yet I stuck it out for half an hour until we were both in tears and Leo’s distressed wandering reached its apex. Come on Leo you love the sleeping bunnies – hop little bunnies hop hop…. I was genuinely upset at the time, but I went home and had a cup of tea and now I’m laughing about it, maybe not heartily, but still I’m laughing.

Another thing that made me cry: The first letter I received from the Child Development Centre stated that Leo made inappropriate noises almost constantly.  It is true that he makes noise, and I had convinced myself this was A Good Thing as it showed intention to communicate. When I saw inappropriate noises I just crumpled. The letter showed me my son through the eyes of a professional. He wanders without purpose, he is non-compliant. The language is unfortunate and dehumanizing. That night I had a dream about going shopping with a 15 year old Leo dragging his feet  and saying ‘ah ah ah’, with people staring and looking sympathetic.   A wise person told me to replace inappropriate with atypical. This made everything better almost immediately, but it also made me remember this cannot be about me feeling embarrassed or disappointed. I feel like I am working things out, and I know I will be proved wrong again before too long.