Professor Tony Bailey

One of the very striking things about autism is the way it first shows itself is almost as variable as the way in which it shows itself. So some parents are worried from very early in life, especially if they've had other children previously, if not had developmental difficulties, they might be worrying because the child doesn't seem to be regular in its sleep, wake patterns or has trouble feeding, but it might be constantly screaming, or conversely, doesn't seem to cry at all, or possibly doesn't smile or takes an interest in people the way it sounds in the environment.

But other parents get worried because child seems to be delayed in acquiring language or slowly develops social difficulties. And then in about a third of people with autism, parents believe their child is developing normally into the second or third year of life, and then over the course of a few days or weeks or sometimes months, the child will lose a small amount of language, usually single words, and sometimes that loss is associated with loss of social skills as well.

As far as we know, one can see all those different patterns affecting two individuals on the spectrum in the same family. In other words, it doesn't seem to be the case that different types of autism are associated with a different pattern of onset. There haven't been many postmortem studies of autism, although that is an area that's receiving a lot more attention now.

Now, the studies that have been carried out have usually found some evidence of neuronal differences that must have had their onset before birth. There isn't a cause to say that everything about autism has its own set before birth, but there's certainly good evidence that some of the differences in brain development. The founding studies of the brain after death probably had their origins as early as 12 or 13 weeks in development.

Of course, that doesn't mean that the critical things happened at that time. Possibly they happened early, or the things that are most important for the development of autism may have happened rather late, but certainly it means that when we're when we're thinking about the overall process, it's not very sensible to think about birth onwards one really needs to see development really beginning from conception.

I think the first thing to do, especially if it's a young child, is to talk to the health visitor and the general practitioner. Children's development is, of course, very variable, any how, some children who are very rapid in some areas of development and some slow in others. But I think parents have a real concern because there's something specific about the child's behaviour that they've not seen in other children, or perhaps a grandparent that is concerned because they've had more experience of seeing children.

And I think they should seek advice. And usually the GP and health visitor will make a decision about whether the child needs to be seen by a pediatrician. Sometimes, of course, they might say, well, let's wait for a few months. And I think then if the parents concerned hasn't gone away or the child's development is still not as the parents expect them, simply they need to go back and say, no this problem isn't resolving.

The diagnosis of autism is very dependent on eliciting descriptions of behaviour that are typical of children on the autistic spectrum, as well as seeing evidence for oneself that the child is showing up those sorts of behaviours. At the moment, there isn't a blood test, or a brain scan, or a physiological test that reveals the presence or absence of autism.

So the paediatrician will be asking the parents about the child's social development, how they're using language if they’ve got language, what sort of pre language skills they have, as well as asking about how the child spends their time on a daily basis. Do they tend to do things repeatedly, or they're interested in things that other children aren't interested in.

How flexible are they and fitting in with family routines? So the job of the paediatrician is to try and establish if there are characteristic patterns of behaviour in each of these three areas of functioning. And then when they see the child to establish what the child's level of social interaction and communication are, and also to observe whether or not there are any repetitive behaviours of course.

Often in a small time window, one doesn't always observe behaviours that children might show quite a lot at home.

I think one has to recognise that getting a diagnosis for a disorder is a chance to shock too anyone. And I think parents should expect that they have to go through a process of sort of, absorbing that information and then needing to find out what the significance of the diagnosis is. I think probably the main perspective I can give to parents is that children with autism develop so that the child, at that point in time is not going to be the same in a year's time or in three years time or in ten years time. It's not a fixed label.

So children with autism develop in the same way that other children develop. And I think parents mustn't lose sight of that. I think the corollary of that is that parents need to be prepared for getting help for the child right through, uh, childhood and into adult life. So autism isn't the sort of condition where one just needs to intervene
or help the child at one particular point in time and thereafter everything will be fine. One sort of needs to stay on top of things for, for a long time.

I think, I think the other advice I would give to parents who are often very worried about what will happen after they're no longer around, particularly for a child who had got a lot of difficulties early in life. It is that
society's attitude and approach towards autism has really changed quite dramatically. And I, I think we are now much more aware that we have to provide support and help for people. Or maybe just keeping an eye on someone who's, who's very able all the way through, uh, the lifespan.

I know it's a huge worry of parents, even of very young children as to who's going to keep an eye on this individual when they're not there. And I think as a society we've just moved a long way in terms of putting in
place institutionalized frameworks, if you like, for supporting people on the spectrum.

I think reading about autism is a help, but it can also, I think cause a lot of anxiety if the sort of child,
the one reads them out on the internet or in books doesn't seem in any way similar to one's own child. 'cause the spectrum is so huge.

I think most parents find it very helpful to talk to other parents of children with autism, especially if they can find parents whose child, uh, is somewhat similar to their own because, or although parents do receive lots of help from professionals, that's not quite the same. I think as talking to someone who's been through it before.

To understand this is from a historical perspective. What usually happens in medicine is that someone describes a group of individuals with a particular collection of characteristics that often gives the disease a name. Then usually what happens is that over the following years, people identify people who have rather similar symptoms but don't seem to fit the core disorder. And sometimes the boundaries of the disorder get stretched.

And other times the this new group of people get given. Then the disease gets given a different name. That's pretty much what happened with autism. So autism was described by Leo Kanner in 1943 and then subsequently doctors realized that they were seeing children with difficulties that look similar to autism. That didn't quite seem to meet these very stringent criteria.

So he coined the term atypical autism. And then many years later, what we now call the autistic spectrum was called pervasive developmental disorder. That was the umbrella term to describe all of these different characteristics. And people realized that there was some children who were less severely affected than children with either autism or atypical autism and they got given, the rather unfortunate diagnostic label PDD-NOS pervasive developmental disorder not otherwise specified.

In other words, it wasn't either autism or atypical autism. By now, of course, people is starting to recognize Asperger's syndrome. So we had four labels. The term PDD-NOS is really quite unfortunate because it implies it's a sort of leftover category, but three the best epidemiological studies suggest that most people on the spectrum actually fall within the, diagnostic grouping.

Of course, labels quite useful shorthand sometimes between professionals to to communicate with each other. But they imply some specificity that probably isn't, biologically valid. So we know that one can see families that contain two or more people with autism that can have or lie on the autistic spectrum, and they can, fall within any of these diagnostic categories within the same family.

So you might have a family, two people with autism and two people with Asperger's, but equally, one could have a family in which there's one person with autism and one with Asperger's syndrome. So we tend to think these are variable manifestations of the same underlying difficulty. And there's some advantage, perhaps, to moving towards saying someone lies on the autistic spectrum.

Well, we've known for a number of years that a small proportion of people on the autistic spectrum seem to have symptoms of autism connected with some other sort of disease. The commonest diseases that are identified in association with autism, tuberous sclerosis, fragile X syndrome and all different sorts of chromosomal abnormalities. And we've usually assumed that the vast majority of people with an autistic spectrum disorder have a genetic predisposition to lie somewhere on the autistic spectrum, but there isn't a 1 to 1 relationship between the susceptibility genes that they carry and whether or not they lie on the spectrum and or indeed, when on the spectrum they lie.

And in that respect, autism is very similar to heart disease, diabetes, asthma, or common diseases that arise on the basis of a complex genetic risk. And when whether one's affects a lot of them depends on an interaction.

Usually we don't think that people recover. We think that what happens is people learn, consciously or subconsciously, different strategies for getting by in life. Of course, we can't be absolutely certain that there are some people who recover, but most patients that I've seen where I've seen them maybe 10 or 15 years after I first saw them. Even the people who have done very, very well indeed in, in certain sorts of situations.

It's possible, I think, to see they're having to work quite hard and getting by in a complex social situation. But we use all sorts of different strategies for all sorts of things. I'm terribly bad at maths, and I'm sure that the strategies I use to get by in maths is not the same as someone who's naturally skilled at maths.

So I think the fact that people, in a sense don't recover or are cured doesn't mean that in fact, lots of people can't live lives that are very fulfilling and and, are achieving all sorts of things, even though the way they achieve those things might be slightly different from you.

Well, I think in medicine the reason that we make a diagnosis is to be helpful to someone. There's not much point in having a diagnosis if it's not going to help. So I think if people are content with their lives, things are going fine. They're not having more difficulties than average then, unless they're thinking of having children or wondering when there's an increased risk of having a child with autism.

If they think, their effected, then no, I wouldn't say that. Everyone else, I wouldn't say that everyone has to have a diagnosis. Diagnosis can be helpful if you're having difficulties in some parts of your life because in a way, a passport to getting the help that you need to overcome those difficulties. Some people find having a diagnosis is helpful because possibly some things haven't gone well.

They're feeling guilty about it, wondering if maybe they tried hard, or whether things would have worked out differently, and sometimes have an explanation for why people are good in some areas of their life and not so good in others could actually be a relief to people. But I see particularly teenagers who are sometimes very resistant to having the diagnosis and believe that that in a sense, is putting some sort of ceiling on what they can achieve in their life.

And I think that's not a helpful way to think about it. We all vary tremendously in what we're good at and what we're not so good at, and most of us gravitate to areas of life that maximizes skills rather than ending up doing things that we're not so good at. And I think that's the way, to think about individuals with Asperger's syndrome or, who are very able individuals, that this is

not something that intrinsically is going to stop people having a fulfilling life. And there can be times in your life when having the diagnosis might help, if that enables you to get help, that would enable you to achieve a particular ambition. But you don't have to have a diagnosis.