Regression, special school and a glass door

I wrote this post shortly before Christmas, published it, then realised I wanted to edit a couple of things. I then got caught up in a horrendous sickness bug and various other chaotic events, with the result that I forgot to re-publish it. So apologies if you have already read this; an  update will follow shortly, as much has changed since I wrote this:

Spinning on the spot, flicking fingers in front of eyes, hands covering ears, unusual eye and head movements. These were some of the autistic ‘behaviours’ my son did not display. Until recently. Now he is doing all of this, plus more of the stuff that he was already doing, avoiding eye contact, staring into space, getting distracted from the task in hand.

Worryingly, he is also getting confused about about language. Leo go and get your shoes resulted in him setting off purposefully, only to do a full circuit of the kitchen and living room, returning empty handed. When I asked him again he simply wandered off, as if he didn’t understand. I went to show him what I meant: your shoes Leo, see, by the door, we found them. He didn’t object to any of this, but it was as if he was not connecting any of it up either. Now, I know that he has the capacity to understand, I know that. Just as I know that he can make eye contact when he is happy and relaxed, not because he is being praised or rewarded, but because he wants to.

These new developments tell me something is wrong, but it is not the behaviours themselves. He can’t speak but he is sending me little messages, tellinme something is too much for me, I can’t cope. He puts his hands over his ears just before he falls asleep, when everything is quiet. When he does this he gives me a look as if to say help me. It is so clear I can almost hear him say it.

I have informed all the professionals involved with Leo about this new development. I don’t know if I expected help or reassurance, but I didn’t get any. This is the pattern of autism was the message, delivered with a head tilted in sympathy and a slightly sad look. They have seen so many autistic kids it is nothing new  or alarming to hear a mother say that autistic behaviours have increased. This is just what autistic kids do. Well, that is not enough for me. I feel compelled to get to the bottom of it, to find out why he is in distress.

Christmas? I doubt it. Leo is very ‘ho hum’ about big changes. I have been given an advice pack about how to handle Christmas with an autistic kid, and I am sure a lot of it is highly relevant to a lot of kids, but Leo has problems with almost none of the issues mentioned. He is neither surprised or upset by big changes going on around him, whether they involve a new house, a new room, or a bit of tinsel.

Pre-school? Hmmm…. this may have something to do with it. If his home-school journal is to be believed his sociability levels at pre-school are through the roof. He has been laughing with other children, playing with the same toy, taking a turn without crying, and letting another child cuddle him. Parents of autistic kids will know how huge those things are. I know if I have been to a party or even a social occasion of any sort I have to collapse when I go home, Even if I have enjoyed myself I certainly don’t want to talk to anyone else for a while. Maybe pre-school is like a party every day. Too much! Too too much!!

He also has ‘worktime’ at pre-school. This is where he matches shapes, colours, hammers pegs, sorts teddies. threads beads, and generally follows instructions, sitting nicely with hands down. By ‘hands down’ I do not mean he is prevented from flapping his hands, but that he should not grab the items before the teacher has presented them on the table and told him what she wants him to do. I have mixed feelings about this, but it is for tiny amounts of time so I am thinking it is not going to be a significantly distressing to cause the kind of changes I am seeing. The crucial thing is that the ladies who teach him will let him stop his work if he is having a difficult day and they enjoy his company, and even appreciate it when he swaps round the cards on their schedules in an attempt to manipulate the session and avoid activities he would rather not do. There is some expectation of compliance but it does not take over the session, and Leo and I both appreciate that. However, is worktime becoming too much for him? Or, more likely, is he bored with it?

Is he having too much screen time? It is easy to let this creep up. His angry birds obsession makes him laugh, and his laughter makes me laugh, and I can sometimes convince myself it this means it is good for him! In fact though I think screen time has actually been decreasing. He has been siging ‘stop’ when the TV is on and seems to be easily overwhelmed by it.

Leo now has a PECS (PIcture Exchange Communication System) book. Could this be causing stress? It contains pictures and photos of things he can ask for -food, games, actvities. It is fairly simple. The Speech Therapist has introduced a ‘sentence strip’ and has placed an ‘I want’ card on the left hand side. Instead of simply bringing me a picture Leo has to place the picture card on the strip next to the ‘I want’ card. He then has to remove the whole strip and pass it to me and I read it. We sign the sentence at the same time. It is of course much easier to just give me the card and he has let me know very loudly that he does not agree with the new regime (I am not overly fond of it myself but I do understand why we need to persist). However, I think it is unlikely this is the sole cause of his recent regression.

My number one suspect is sensory issues. They are deserving of a whole post really, but for now it is enough to say that we learn through our senses and if they are jumbled, then learning and relating to others is bound to be affected. And it is the seven senses rather than five. Vestibular and Propriocetion (sorry eight, there is Interoception as well) are the forgotten senses. I think they are overdue an awareness campaign of some sort. Look them up, it is fascinating stuff! It is highly likely that his brain is dealing with more input, than a non-autistic brain, he has more information coming than most people. And then sometimes not enough, or not enough that is useful. Either way, maybe it has reached some kind of tipping point, where he can no longer cope. How can he sift through all the input without getting lost and retreating to something he can rely on? Something he creates himself, something he can control, something he can make sense of. This may be the origin of the noises that he makes as well as his recent behaviour.  I don’t know. These are guesses.

In any case, our next step is a Sensory Integration Assessment. Sensory issues are central to autism and it is pretty outrageous that the NHS almost ignores them. I read a description that trying to help a child without addressing sensory issues is like watering the leaves of a tree but not the roots. It is possible to see an Occupational Therapist if your child has severe problems, for instance if they cannot feed themselves or maybe if they are self-harming, These do not apply to Leo. So yes, we have to pay for it.

A visit to the local special school coincided perfectly with Leo’s regression or retreat, or whatever it is. In September Leo will leave pre-school where he goes for 2 afternoons a week and go into a Nursery class of some sort. We need to apply for a ‘statement’ which sets out what support needs to be in place for Leo. It is legally binding. You have to name which school you want your child to go to, so we are looking at all the options.

I went to the special school expecting to think he is not going here. And by and large that is indeed what I thought. The wonderful lady who showed me round spoke of an individual programme that could be created for my child. Wow I thought. Maybe I will change my mind. Every morning most of the children will do a sensory circuit in the gym, sliding, crashing, spinning, whatever is needed  to either wake them up or calm them down and get them ready for learning. Not a bad idea for any child. One class had just returned from horse-riding, the classes do either swimming or riding once a week. A specialist music teacher works with every class. Again, wow.

The Nursery is where Leo would go. It is in a spearate building, adjoining a mainstream nursery, with a glass door dividing the two. The idea is the children will have access to specialist input, but will also have the chance to mix with regular children (oh dear, that is a terrible description, I wil call them mainstreamers). There is a beautiful large play area including some woodland. What could be more perfect?

Well. There was something of a disconnect between what I was told by my guide and what I was seeing in front of me. The teachers seemed tired and disengaged, a couple of them snapped impatiently at the children. The teaching assistants chatted to each other and looked around the room as if bored. It is near the end of term and I am sure these things can be observed in mainstream schools too, so I am not making any definitive judgement about the school. I somehow expected staff in a special school to be more engaged, more gentle, more patient, but they were not. The children in the Nursery were sitting in their seats having what looked like a fairly formal lesson. The all have PECS books just like Leo. One girl had an ipad. None of them appeared to be able to talk. A little boy got out of his seat and was told to sit down. He started flapping his hands and was told to find a picture in his book to say what the matter was. He flipped through the book and gave up. Nobody helped him. Another child was told not to squirm in her seat. She started shouting and was told to ssshhh please. With one exception I did not like the way the teachers spoke to the children. I am well aware that these things may be observed in a mainstream classroom too, and I was not appalled, but I was not impressed either.

Through the glass door, in the mainstream part of the Nursery the children were running around, shouting, and playing. They were noisy and crazy and none of them were told to ssshhh. Again, I am aware I was just seeing a snapshot of the day; the mainstream children may have been on a different timetable, I am sure they have to sit nicely at some point during the day too, but during my visit this is what I observed. I thought about Leo doing his worktime at pre-school while the other children played. And I wondered: do we expect more compliance from children with special needs. In our anxiety to help them fit in, to help them learn, do we apply standards that we do not apply to children who are not having problems? If I was having a really dark day I might ask if we prepare children with special needs, not for life but for some form of institutionalisation. I don’t know the answer. I am not saying that they should be allowed free rein because they have special needs. In fact, I saw three older children outside at lunch time in the playground, with no shoes or socks on.  I would have thought that is not something they should be allowed to decide for themselves, and that footwear must be worn outside. But all of this is why I need to go back, to make sure that I saw what I thought I saw.

There is another, bigger problem and that I realised indirectly. My guide explained that all the children are taught together until year 3 (age 7-8) when they are split into two groups.  She then showed me the Severe Learning Difficulties classroom and the Moderate Learning Difficulties classroom. And that is when I realised that is it. Severe or Moderate. The classroom for children who are autistic and bright but with huge sensory issues does not exist. If Leo were to stay in the school the best he could hope for is to be top of Moderate Learning Difficulties Class. Does there come a point where the glass door no longer opens for children like Leo?

Strange as it may sound, after all that, I have not ruled it out. These last few weeks Leo looks more and more like the children at special school than the children I see coming out of mainstream nursery. I feel more comfortable talking to other autism parents because they understand. Maybe it is the same for Leo, and he will feel more at home in a place where people understand him. I try to imagine where I would rather be if I were Leo. Certainly a class of six children rather than 30 would be easier for him to deal with. At mainstream, the quality of the 1:1 support is crucial. Your child’s statement may say that they need 1:1 support, but it is the school’s decision about who that person should be. My non-speaking son would have to rely on that person absolutely for support. It is quite a scary thought.

The most common attitude among autism parents (not all of course) seems to be: Try mainstream, then special if it doesn’t work out. I am wondering if it can be done the other way round. Have a year in special school, and get that specialist input, and hope that it gives him an extra chance to develop to the point where he is more able to cope in mainstream. There may be a reason why this is not a common approach, however. The danger for me is that the special school staff would only expect a certain amount of development, and may not even notice a child for whom the setting is no longer appropriate.

There are other options: an autism unit attached to a mainstream school, a bit like the Nursery in the special school. It sounds like the ideal solution, but places are limited, and like anywhere, there is no guarantee of quality. The nearest lower school with an autism unit  is a long way from us (30-40 minutes drive) and there are only 6 places for the whole school. The special school also offer something that is tempting in theory at least. Your child can be taught in a mainstream school but by specialist staff. Your child wears the uniform of the mainstream school and in most cases considers themselves to be a pupil of that school. However, they are in fact a pupil of the special school, even though they are not physically present. If I could request this then I probably would, but I can’t. The way it works is that your child has to attend the special school for a time, and then be chosen as suitable.

This brings me to the final option. Home education (gulp). I see why people do it, I really do. If I felt there was no place for my child then I would do it too. I know there is no perfect school for Leo, or indeed for any child. I don’t expect to find one. But I do see why education causes such anxiety amongst special needs parents. For some (like me) home education is the last resort. I can also see why for some it might actually be the first choice.

Speechless

I have been gearing up to write about Learning DIfficulties, but I can’t quite bring myself to start. I recently learnt that in addition to autism, my son has a chromosomal abnormality (microdeletion 16p11.2) which is strongly associated with Learning Difficulties. I know very very little about this huge topic. Is a learning difficulty (you see how I don’t even know whether or not to use capitals) simply anything at all that impacts on learning, in which case we all have them, so why worry? And stop making such a fuss and get on with it (is the possible implication). Or does it have to involve a low IQ, bearing in mind that IQ tests are not the only way to measure intelligence and that there are different kinds of intelligence. Is autism a learning difficulty? For most people it certainly impacts on learning. And yet once obstacles to learning are removed it is often possible for autistic people to learn exceptionally well. I think it is best to leave it there for now as I feel I am already getting into trouble.

There is learning and there is also teaching, but the two do not always go together. My son is three years old, and has not yet learned to speak. Does this mean we have to teach him? How do you teach someone to speak? Most parents do not have to worry about that at all. You read stories, sing songs, chat away to them and eventually they start speaking back to you. Hooray, job done, you are a good parent! To be honest, it seems to me that even if you don’t do those things, the speech would probably come along more or less when it should. Leo is non-verbal (actually I think technically he is classed as pre-verbal which sounds a bit better but is not), and I have received and put into practice a huge amount of advice from professionals, fellow autism parents, books and the internet. I can turn any activity into ‘ready steady….wait for him to look or make a sound…..go’. Likewise turn-taking: ‘Mummy’s turn…Leo’s turn’. Turn-taking is important because it helps with attention and without attention you don’t learn. Turn-taking is also the basis of conversation. I can see the logic in all the activities I have been advised to do, it all makes complete sense. I sing songs whenever possible (singing is sometimes easier than speaking for autistic people) ,sometimes I sing a commentary on what we are doing. He tends to look at me as if I am a bit bonkers when I do that. I listen for any noise that could be a word and repeat it back to him as if it is a word (bearing in mind there are barely any of these). I put things he wants out of the way so he has to ‘ask’ for them. I do things wrong deliberately to provoke a reaction, I pretend to forget things: ‘where are the spoons, I can’t remember’. I say what we are doing: ‘up the stairs, we are going up, up, up’. I slowed down my speech and used simple two word sentences, I repeated sounds in an exaggerated way: ‘p,p,p,pop the bubble’. Actually I have stopped doing these last two. The more I read the writings of non-verbal autistic adults the more I want to talk to him ‘normally’ and feel it is important to do so. To do otherwise always felt forced to me and I feel quite liberated in abandoning some of the techniques.

Leo has certainly done a lot of learning, in the last few months. Whether or not this is down to any of the teaching he has received is anyone’s guess. He can now imitate physical gestures very well (imitation is essential for learning speech); he finds it easier to pay attention than he did; he can respond to questions by pointing to or signing the answer. The impact on his speech has been almost zero. Even making a deliberate sound is still so hard for him. He can roar on request but that is it. He was just as unable to blow out the candles on his cake aged three as he was aged two. The books recommend using straws to blow through, or kazoos, or party blowers. The problem is that he just can’t do it. Like I can’t do the splits. Someone could demonstrate how to do the splits, and I would be able to see what they are doing. Just put your legs like this, it’s easy – see! I still would not be able to do the splits. I choose this as an example because aged about eleven this was my dearest wish, and I was highly motivated, but my body simply would not co-operate. I feel it must be a bit like this for Leo when people try to demonstrate the mechanics of speech to him. I also worry that constant repetition of things he cannot do is teaching him his failure to learn the skill, that the failure is somehow getting grooved into his brain. And that with each attempt the failure becomes part of him. Even if that is wrong, I feel we need something different, a new path.

I used to ‘hear’ him say a word or two sometimes. Yogurt, dog, dad, car, go, wow, down, out, book, cat, again… I think there are more. It is not just me. Several professionals have also told me excitedly they have heard a word or a word attempt. I don’t hear them any more, because it is too hard when he does not say them again. To make speech the be all and end all could easily end in heartbreak for both of us. At one point I had the attitude of; ‘he will speak and that is that’ but I have realised it is something I do not have control over. He may well speak at some point. He may not. I don’t know. What is certain is that he needs a way to communicate. A better way then the 20 or so signs he currently has. Better even than the pictures that we are compiling with the help of the Speech Therapist. He needs to express himself using words. This may be a voice output device, it may be typing. He will need to learn to read. That is an exciting thought. He already loves letters and knows the names and sounds, upper and lower case (without anyone teaching him as such). This is a very different path to speech but it could be just as wonderful. It suddenly seemed important to say this to him: ‘your words are stuck in your head Leo, but I know you can understand me.’ I got very clear sustained eye contact when I said this to him. He looked at me for a long time and then carefully touched his mouth. I will help him find a way to unstick his words, but we will not limit ourselves to speech alone. I have a feeling once his words are unstuck he will have a thing or two to teach us.

self-pity, and why I love the dietician

I loathe self-pity, probably because I can fall into that particular pit with alarming ease. With Leo’s new diagnosis it has become more of a danger than usual, and I have been reminding myself that There is always someone worse off. I only have to watch the news occasionally to see that this is true. For an hour, or a morning it might even help me feel lucky, to be grateful, and to deal with whatever I am facing with more of a sense of proportion. This rarely lasts more than a day, and maybe that is a good thing. I don’t really want to get the energy to deal with my own issues, by feeding on the difficulties of others. It is more than a little distasteful to turn someone else’s sorrow into a kind of self-help tool for yourself. Perhaps these days I am aware that my family could even be used in that way ourselves.

Occasionally however, it is helpful to be reminded that yes, things could be worse. As far as I was concerned, Leo’s test results were all in; he had had blood tests, and urine tests and all had come back normal. Then a letter arrived announcing that the urine test for mucopolysaccharides had been returned as normal. This was the test I wish I hadn’t googled. A cruel metabolic disorder with no redeeming features. If I had known that test was not yet in I would have been jumping on the anxiety train on a daily basis. I was flooded with a huge sense of relief, but it also took me a bit closer to an acceptance of what is. A bit of Leo’s chromosome is missing. Nothing can be done about that, it is a fixed fact and it can’t be fixed. I can’t fight it, he can’t fight it. How it affects him is as yet unknown, but certainly he has speech delay and autism, and both are high on the list of associated problems. Unlike autism I still can’t embrace 16p11.2;  my attempts to reframe it positively have fallen flat. However, I can work on accepting it. It feels like harder work, but for Leo’s sake I have to do it.

The day after the test results letter, I tore open another letter form the Child Development Centre. These days, when I see parent or guardian of…. on the envelope my heart steps up a gear. I even thought I could see a red stripe on the letter, as if they would alert me to bad news in this way. In fact it was simply another appointment to see the dietician.

Appointments can be annoying. You often feel you are just giving the professionals the same information over and over to no purpose. They will often then send you a letter detailing (with varying degrees of accuacy) all the things you told them at the appointment, finishing with the reassurance that they will review your child in x month’s time.

The dietician however, was cool. We needed to see her because of Leo’s extreme pickiness. I was surprised to learn this could be related to autism and I wanted someone to tell me it wasn’t my fault. It sometimes seems as if parents take full responsibility for their child’s food intake, despite the fact that you cannot force somebody to eat something if they do not want to do so. Nevertheless, I was deeply ashamed of Leo’s food diary, which went something like this:

toast and jam, dry cheerios, peanut butter sandwich, apple (hooray!) yogurt, dry cheerios, yogurt, peanut butter and rice cake, yogurt, boiled egg and toast, yogurt, banana (hooray!), chocolate cake, dry cheerios. Vitamins. And so on. It is bizarre that I feel like a good parent when my son eats an apple.

I scattered references to the things he had been offered and refused over the three days: a very small portion of roast chicken and potato, a carrot, some grapes, a raspberry, a cheese sandwich. He doesn’t just refuse to eat these foods, he refuses to look at them. The more we say they are yummy and eat our own portions enthusiastically, the more determined he becomes. I can imagine it is most annoying, so I can’t say I blame him. Every mealtime I have the choice of giving him something he will eat, or throwing food in the bin. It feels a bit better to follow the advice to put a bit of the food we are eating on a little side plate for him to explore. The only problem is, he doesn’t explore it, not even with his eyes.

The dietician said that this is a very very typical diet for an autistic child, and in fact it is not that bad. I wanted to hug her. She went on to explain a picky child will eventually eat if there are no other options. Most of the time an autistic child would prefer to starve themselves. She explained it like this. For Leo there are two categories: food and not food. We all have these categories, but for Leo, the ‘not food’ category is rather bigger. So when we offer him roast beef, or rice pudding, or peas, or pears, or porridge we may as well be offering him the cushions, the table and the chairs to eat.

In theory a plate of slugs could be a source of food for us. However, most of us could not eat ‘just one’ even if others were eating them. The ‘damp’ foods like meat stews and vegetables we offer him may well be causing a similar reaction in him.  She advised us to keep serving him what he likes, to not make an issue of it and just to push gently at the edges sometimes. He likes crunchy food so try crackers. Get him used to variety by cutting his toast in squares one day, triangles the next (I already do this, hooray for me). See if he will touch a runner bean then eventually lick it. Maybe one day he may eat some of it. What I loved the most was that she helped me to see things from Leo’s point of view. I had fallen into the trap of seeing it as a problem for me, and was too focused on my own feelings about it to even realize it is not about me. Again.

The issue of diet has become even more relevant following the 16p11.2 diagnosis. Apparently around half of people with the microdeletion are overweight or obese. Leo is not, but he definitely has the chubbiness my other kids had before they started school. Pre-16p I was not the slightest bit concerned. Now I am engaging in slightly deranged thinking: he had four slices of toast this morning, is that too much? I am only too aware that monitoring his food intake could well be counterproductive, and I need to find another way. Luckily I know a great dietician. In fact, I need to find another way to deal with all the 16p issues. I could end up seeing everything through the prism of either autism or 16p. The ideal is to hold those things in awareness, whilst seeing things through his eyes. And even as I write it, that suddenly seems perfectly, wonderfully possible.

Support and Syndromes

I hate uncertainty. I can deal with almost anything, or at least I think I can, but not knowing is unbearable. We now have a lot of information but very few answers, at least to the questions I am asking.

Rewind to Tuesday lunchtime. The schedule is simple: get taxi to support group, come home, meet daddy and then go to the appointment for Leo’s abnormal results.

We arrive at the support group. It is for parents of autistic kids, but (hooray!) you can take the kids along too, and I have been looking forward to it for months. The group leaders greet me at the door, one of them guesses who I am, and starts chatting to me about Special School and hands me details of an open morning. Her son has Apserger’s and attends a mainstream school with an ASD unit. I start to feel sick and lose the thread of what she is saying. I take a biscuit I can’t eat and drink a cup of tea I don’t want. I can see there is a lot of support here, a lot of information: 5 or 6 big folders full of info on services, education, health…chew toys and fidgets for sale. Autism cards and t-shirts. Special Needs catalogues.

There are only 3 or 4 young autistic kids there, most of the parents have school age children and are attending on their own or with a younger sibling in tow. There is one boy, nearly 4, who is clearly autistic, spinning and screaming, and then suddenly bursting into laughter. He will be going to the Special School in September and I chat to his mum about applying for a statement. Leo is trying to escape and I have to keep looking to check he is still in the room. At one point he lies down and licks the floor (something he has never done before). She understands, and that is nice. I will enjoy this another time. Okay, maybe enjoy is a bit strong. Appreciate. I will appreciate it.

I clock-watch till 2.30 and then we’re out of there. I have overloaded to the point where my worry circuits are no longer working, and a relative calm descends. I know the doctor only works at the Child Development Centre on Thursdays and he is coming in on a Tuesday just to meet with us. Surely that is the sign this is serious. His reluctance to disclose details seems like him sticking to his training: do not give bad news over the phone. I tell myself I can cope, I just want to know. I think I believe it.

In the waiting room a lady walks over and calls Leo’s name. Years of appointments with James and Caitlin have given me the ability to tell immediately if someone is a doctor, and this woman is not. She is not a medical professional at all I don’t think. Suddenly I feel worried again, the kind of worry where things go in slow motion. She introduces herself as Julia, the family support co-ordinator for the Centre and asks if it okay for her to sit in on the meeting. Family Support Co-ordinator!!  She is not just a family support worker, she is the top one. I need support just to get to the meeting room, never mind afterwards.

Shamefully, I still found time to be irritated at her. Leo kept running the wrong way and she kept calling him and saying clever boy. My real irritation however, was that this is her job, and this is our lives. I imagine her telling her friends about her stressful job, that she just has to leave her work at the door or it would drive her madHow she really needs that glass of wine when she gets in. It annoys me that she is wearing high heeled boots and a too tight skirt that is also way too young for her. There is actually nothing nasty about this woman, she is obviously a very caring person, but in the moment I can’t help myself, and I detect pity in her glances, her head held slightly to one side, her voice soft and thoughtful.

The doctor decides to launch into a long explanation of the autism diagnosis. Yes, yes we agree with the autism diagnosis. I have been pestering for weeks, so he must know we agree. I nod at everything he has to say. I can see he has a piece of paper with a list of 4 things to discuss and I am straining to see what they are. The baby starts to cry and now I have to strain to hear.

Finally he delivers the verdict. Chromosome 16 (I had heard of 18 and 22 linked to autism but not 16). Microdeletion 16p11.2 (group 1). A little bit of the genetic material is missing. It is rare. It is called a syndrome but in his opinion it is not really a syndrome, as it is not very syndromic (a new word to me). He hands me a leaflet and keeps saying learning difficulties. The baby takes the crying up another notch. I tell him I don’t see learning difficulties in Leo. He says that is good, not everyone is affected in that way, it varies a lot. I stand up and jiggle the baby around, asking questions. Is this the cause of Leo’s autism? No, no. Having this raises the risk of autism, but most people with 16p11.2 do not have autism. And only 1 in 100 people with autism have this abnormality. My mind starts to struggle with the numbers and concepts. What else does it mean? more risks, more numbers, nothing clear. Half are obese due to metabolic differences and blood sugar imbalance, some have seizures, most but not all have learning difficulties, some have minor facial features such as a large head and folds on eyelids, clumsiness, poor gross and fine motor skills, heart defects, some other things. None of them are very nice.

He tells us we must be tested, and I ask why. He says to see if we have passed it on or if it has arisen spontaneously (it is usually spontaneous). I ask how that will help Leo. He doesn’t know, but it may give the geneticist more information, and we can discuss everything with her once the results are in. They are due in just before or just after Christmas. I had been concentrating on trying to understand, but suddenly I feel a bit sorry for myself again.

I wonder about the relevance of inheritance or otherwise. As I understand it, and please understand this may not be the whole story, if one of his ‘normal’ parents has the same deletion of genetic material, the consequences are possibly less serious for Leo. So in a way, I hope one of us does have it. But then there would be a 50% chance that one of the other kids have the same deletion and could pass it on to their kids, so then I start hoping it is what they call ‘de novo’, a new abnormality. I wonder what will be gained by this extra information, but we are on a treadmill now and it is too hard to get off and say we want to remain ignorant.

Before we leave they measure our heads. Leo would not agree to this but we were more compliant. The doctor wrote down the numbers, nodding and gave us a little smile as if to say our heads are of normal size. I wondered what he would say if they weren’t! It seems more than a little rude and I imagine a note on the file: maternal macrocephaly. I guess this is the same principle as before: If one of us has a large head and no deletion of genetic material then Leo’s large head is probably just inherited from us and not related to his ‘syndrome that is not a syndrome’.

We leave exhausted, and I feel relieved, almost joyful that Leo’s life is not at risk. Everyone we know reassures us that he does not have learning difficulties, he has communication problems, yes, but that is not the same thing. In the daytime all this makes wonderful sense, but at night it closes in on me and I wake every 2 hours, then every hour. I know I can’t deal with the future now, but it rushes in on me when no-one else is around.

My belief in my son’s unlimited potential is slightly dented, and the fear that Leo will never be independent is more present. Autism did not cause me to grieve, but this could. If necessary I will grieve and then get on with it. The adjustment would be huge, but I can’t start it now. In the early hours of the morning I get up and join a support group for rare chromosomal disorders. There are lots of autism parents, but I don’t know any microdeletion 16p11.2 (group 1) parents. It feels lonely.

Fast forward a couple of days, and looking for more answers I call the Early Years Team: Can they do a specific learning difficulties assessment? She calls me back while I am in the supermarket and the conversation takes place as I push the double buggy up and down the aisles, picking things off the shelves almost at random.  I knew the answer anyway: no separate assessment necessary, as they are constantly monitoring him for whatever problems and progress he shows. Before hanging up she said: Amy, we know he does have learning difficulties; when they are this age we call it global delay, but when they are school age we call it learning difficulties. I tell her that Preschool have told me they don’t see learning difficulties, that he is very bright. She gently says that sometimes they are too kind, too eager to say what the parent wants to hear and that this gives false hope. I reach the till and say goodbye.

The information held by Early Years has come from our answers about what Leo can and can’t do, so I can’t really argue with her conclusions. However, when I get home and unload my strange purchases ( why do I have 3 different types of fruit loaf and some highlighter pens?) I watch Leo playing alphabet games on the kindle, identifying letters and even forming a few 3 letter words, I realise we were not asked about academic ability. It is not relevant at this age, knowledge of numbers and letters is neither here nor there. It was all social, language and motor skills. And not surprisingly for an autistic child he scored way below his real age.

My heart lifts as I remember stories of experts underestimating autistic kids, and then sinks again as I imagine a procession of kind people, teachers, health professionals, hearing of Leo’s chromosomal abnormality syndrome and silently jumping to conclusions. I also remind myself that even with learning difficulties, with low IQ, with the kind of delays where you never catch up, his life and experiences would still be exactly as valid as anyone else’s, and my job is to make sure that we all remember that.

A little abnormality

We have been waiting for a couple of letters through the door. Leo had blood and urine test results back in June, and the results have been coming in slowly. You will be pleased to hear that Leo’s results are normal. Just one more result to come in for chromosomal tests. A micro-array test whatever that is, the last one on the list. We are of course also waiting for a letter confirming the diagnosis of autism.

In the end the letters never arrived. Frustrated with the silence from the Child Development Centre I put in a call to chase things up. I was told someone would call me back on Thursday morning. I was unsurprised when there was no call, and decided to chase again on Monday. Late on Friday afternoon a paediatrician called me to say that he just needs to speak to one more person and the diagnosis will be confirmed. He is actually qualified to diagnose on his own, but seeing as he didn’t see Leo (he had to be taken out of the room due to level of noisy distress). He therefore would like all members of the team to agree before confirming. He then casually mentioned that we need to meet next week anyway as Leo’s tests have shown a little abnormality on one of the chromosomes. 

My questions were not properly formed, but I kept asking them anyway. The answers were elusive, non-answers really. I don’t know what it means. I have to speak to the geneticist. We will discuss this on Tuesday. No I don’t think it is serious. I don’t know, there are so many tests done and they give so much information I don’t know what it all means. It may explain his learning difficulties.

That one stopped me in my tracks. Learning difficulties? I see autism but not learning difficulties. Why does that fill me with more fear than autism? Because it does. Does it define your life more sharply? I think maybe so. That is where I am at the moment anyway. I have been thinking of his potential as having no limits, in theory anyway. I know my potential or anyone’s is limited by strengths and weaknesses. At the age of 3 it was theoretically possible for me to become a mathematician. By the age of eight, if not younger, my mathematical confusion was apparent and mathematician was off the list of possible futures. Of course a learning difficulty can be anything from dyslexia, to a profoundly challenged brain, struggling to make any sense of the world. The NICE guidelines state that 50% of autistic children also have learning difficulties. It has been suggested that by learning difficulties the doctor actually meant autism. I hope so. That makes him a bit ignorant, but I hope that is the case.

Believe it or not I have barely googled this at all. As I understand it, it goes something like this. There is no gene for autism. The paediatrician who ordered the tests was not the paediatrician who called on Friday, and she said as much: there is no test for autism, this is to rule out other causes of Leo’s problems. Ok, I understood that. Now we have an abnormal result, but it does not seem to be stopping the diagnosis from going ahead, so I do have some residual confusion. It seems that there are chromosomal abnormalities associated with autism, and other conditions such as dyspraxia, but some non-autistic people have these abnormalities too, with no signs of any significant problems. Then there are abnormalities associated with other conditions that may present as autism. Or something else altogether. Hypermobility maybe as there is significant family history in th form of a brother and sister with the condition. As the doctor said: we don’t know. Maybe we still won’t know after the meeting.

Another thing niggles away. The NICE guidelines for diagnosis of autism which set out best practice, state that chromosomal tests should not be ordered as standard. At the time I didn’t know this so I was not worried, assuming it to be standard. It is not. It may simply be that this particular paediatrician likes to order the tests. Maybe an important diagnosis was missed once and she now errs on the side of caution. More likely, she saw something in Leo that alerted her to the need for further testing. His large head has been a concern for me since he was a baby. One Health Visitor laughed at me. Another took it seriously and said yes his head is large, but it has been that way since birth. SInce the womb even. All his measurements were average apart from his head which was not quite off the scale, but getting there. It is a lovely head of course, just large. I also remember that I got a call to say these chromosomal tests needed to be re-done die to a problem with the machines. At the time I was suspicious and kept questioning the doctor – it’s not because something could be wrong, it’s just because of the machines? She reassured me and I reassured myself and the tests were re-done. So on Friday, when the doctor repeated no, I do not think it is serious I am un-reassurable. I have decided that as long as it does not seriously affect his health or life expectancy then I will be absolutely fine. Anything else and I give myself persmission to fall apart to whatever degree I feel is appropriate.  

Not everyone gets these tests, so who knows how many people would come up with some kind of abnormality. However, as an explanation for Leo’s lack of speech and eye contact, his meltdowns and sensory distress I preferred the vagueness of autism. To pin it all down to a faulty chromosome seems to limit him too much, in my mind anyway. That is probably my own problem as much as anything. He will be the same boy whatever the answer, yes yes yes I know. But I may have to make serious adjustments in my outlook. It also brings up the question of the future again, just when I was starting to do a good job of taking it a day at a time. It goes to the heart of being a parent. Your job is to care for them and then to support them as they go out into the world, gently letting go, until they are ready to live life when you are not around. If that is not possible for your child, the whole experience of being a parent changes completely, and I imagine you have to do some serious work to ensure that the childhood years are not tinged with sadness. I will do whatever I can to make sure of that, no matter what the results tell us.

Picture is of Leo sporting his large head.

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.