Enthusiasm

In my last post I was struggling with Leo’s apparent regression, and in the face of this development, I found myself questioning everything again. I wondered if I had become a little smug, congratulating myself on ‘doing a good job’ too soon. I knew that it was not accurate to describe him ‘slipping away’, but I almost found myself using those words as the eye contact dropped once more, the screaming increased and the desire to communicate and the ability to understand seemed to be evaporating. The only smiles were to himself as he spent more and more time spinning round.  He was struggling and I didn’t know why.

Not long after I posted, Leo was heartily sick, and continued to bring up the contents of his stomach on a daily basis for the next 14 days. I think he missed one day. He had a fever on more than one of the days, but there was no infection. Just a bug, but it must have felt horrible and even worse, he could not tell me about it. He certainly couldn’t deal with looking at people and follwing instructions and joining in with the grown-ups’ strange little games. Once he was better he went back to himself (his still very much autistic self, but the one we have got to know). Before his recovery Leo would repeatedly put his hands over his ears. Most of the time there was no noise to block out and I was puzzled and concerned. He would look at me as if he was asking for help. It has only just occurred to me that was exactly what he was doing. He has used the sign occasionally in the context of some kind of discomfort or being very unhappy about something. I have been trying to teach him the sign for pain, but he had come up with his own – I just didn’t understand it properly until afterwards. Interestingly, since being so sick, he has used pretend sick noises to indicate intense dislike of something.

I also received Leo’s report around this time. Every 6 weeks I get an update on his progress in relation to the targets which have been set for him. It does not come from the pre-school, but from the Nursery Nurse who is part of the Early Years Team. It seems a very roundabout way of doing things, but that is often the way. It stated: Leo has become resistant to completing 1:1 activities at pre-school, with staff reporting that he is throwing objects and refusing to co-operate. At the time, this seemed like it might be part of his new pattern of behaviour, but I suspected there was an additional reason. The 1:1 ‘work time’ activities had not changed for some weeks. He had the same choices every single time and as I keep saying to the professionals although maybe not always that clearly: Leo likes a bit of change, he rejoices in new things, and develops aversions to things if they don’t change every now and then. That is not to say that he doesn’t like structure, but he doesn’t want to do things the same way each time. This does not fit with the view of autism that a lot of people have, including professionals. People with autism are different from each other in the same way that people without autism are. It can be easy to forget that.

I was very interested to read this in his home/school communication book at the start of term: Leo did not want to do work time today, but I said that we had new activities and he sat nicely. Leo completed 5 activities correctly and helped me put away the items when the session had finished. Told you so.

So: he was ill and he was bored. I think sometimes I get so caught up, I automatically look for answers in the context of autism, and sometimes they are much more mundane. A bored pre-schooler whose tummy was hurting. The only difference is that he can’t tell us that he is bored and that his tummy hurts. Communication is so much of an effort for him that even nodding his head is a big deal. He takes a deep breath and concentrates…then comes up with a little bow that he repeats a couple of times. When I first saw him nod I was ecstatic, but also realised how exhausting it is for him to communicate.

As a side note, I think this is what people mean when they tell me Leo is bright, as the Speech Therapist did yesterday. It is not that he is outstripping his peers with his shape identifying and colour matching skills, it is that he is woking incredibly hard and is often very creative in finding ways round the significant disadvantages he has been landed with. In time I hope he will also find more and more advantages to being autistic, but at the age of three they are largely hidden, apart from learning the alphabet and numbers at a stupidly early age. Still, his ability to get by and to negotiate everyday events is a significant acheivement.

The biggest lesson from this little episode was how quickly my energy and enthusiasm turned to panic. And that could have been more devastating than any regression that Leo might have been going through. By enthusiam I do not mean the jumping up and down and cheering ‘good job’ type of enthusiasm. I mean that I am still interested enough in finding out more about him, about developing our relationship and helping him explore the world. It is what gives me ideas to engage with him, it is what keeps me genuine, and allows me to respond rather than react.

For example: the other morning Leo climbed into his brother’s cot and held onto the sides. Leo does not really dance, but he responds to music quite strongly, whether positively or negatively. So I took a chance and put his little brother next to him and turned up the radio. We all jumped around for about 10 minutes, Leo tolerating his brother next to him (this a a big deal) and laughing and looking at me (also a big deal).

If I am not enthusiastic, then I am not ready to play. It sounds so easy, being ready to play, but it is not. I have to be tuned into Leo, and alert for possible ways for us to connect – and keep it going which is the hardest part. Sometimes the connection is so fleeting and is lost in microseconds.. I have to bear in mind that what would engage a non-autistic child will probably not work with Leo. I have to be prepared to prioritise this over the other things I need to do. Enthusiasm is essential, not an added extra.

There is  another potential threat to my supply of enthusiasm,and that is organisation. There is a lot of organising to be done when you have a child,  and this is  particularly the case when you have an autistic child. For example; Leo is using pictures to communicate, and I have to stay on top of these, editing and creating new ones on a regular basis, and keeping an ever growing library of pictures in stock. I am not very good at this type of thing, and at times I feel I am slowly failing a tedious craft project that I never volunteered for in the first place. It is easy to get bogged down in the organisation of it all, particularly if like me you struggle with this kind of activity, and miss oppotunites for connection.

This post was meant to be about our choice for Leo’s education when he leaves pre-school this September, but what was meant to be a side note has taken over the whole post.

Briefly then: Julian and I had a joint visit to the Special School and then to the local mainstream the next day. To my amazement (I am still amazed actually) Julian thought the Special School was wonderful. The activities were not conventional classroom activities  – in one class they were playing skittles for instance, and I can only think that is what pleased him so much.

After visiting the Special School, we had some pressure from the Early Years Team to decide on special vs mainstream. I am still confused as to why this was exactly, but it seemed to be to do with the timing of applying for Leo’s statement that would allow him to receive appropriate support. In reality, I don’t think there was any pressure on us, only on the team applying for statements, but we were visiting the school on a Friday and had been given a deadline of Monday, so it is fair to say it felt like pressure at the time.

The mainstream school was less welcoming in that the Head, Mrs C had not been briefed about our son, and when I mentioned autism she seemed to flinch slightly. She was very controlled and spoke very carefully, but we both got the impression she was trying to steer us away from her school. She did say: If a child can cope with the environment then we can teach them. I think there is a bit more to it than that, but it is a good place to start.

I had explained to Mrs C about Leo’s communication and how he uses signs and a PECS book to communicate. She had not heard of this before. I also used his difficulty nodding as an example of how hard things can be for him. She looked decidedly startled. When introducing us to the SENCO she explained: Leo is autistic and is very non-verbal.  After meeting the SENCO, Mrs B, we made our decision. Mrs B was not startled at all. And despite being in the middle of a messy art lesson, she was still very interested and completely convinced that she could help Leo venture into mainstream successfully. So that is what we will do.

I am still learning what a complex question mainstream vs special really is, and it undoubtedly deserves a post of its own.

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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.

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.