About the presenters: Sharon Howley writes: I was born in South Wales, the eldest of three children. Both my parents were mixed race. I have had a variety of work experiences. I started working in administration, changed to catering and am now involved in welfare work, which I enjoy very much. I have been married to John for 20 years. We have two delightful children both boys. Our eldest is fifteen and going through the awkward teenage period. Our youngest is almost eleven and has autism and learning disability. John Howley writes: Born in South Wales in 1941. Met Father properly for the first time in 1946 when my mother returned to London. I always got on well with my peers and had a significant circle of friends. Moved from London to Stoke-on-Trent in 1966. First job in IT. Moved to South Wales to join British Steel Corporation in 1969. Worked there for many years during which time I got divorced and married to Sharon. We have two children. The youngest, Mattie, is Autistic.

You can post Questions/comments about the following paper to the authors before October 22, 2003.

Living with Mattie

by John and Sharon Howley
from South Wales, UK

John: Have you ever seen those mobile things that babies look up to when in their cots or buggies? The day is calm; there is no wind; the mobile is still. Baby stirs, starts to become fractious, starts to rock the buggy. The mobile's equilibrium is lost. It oscillates wildly and uncontrollably. I sometimes feel that about my speech production processes. At certain times they seem too finely balanced. Then, the slightest upset seems to disrupt the whole system . I refer to these times as periods when I feel 'stuttery.' Anxiety, or maybe even an illness can exacerbate that feeling.

Before Mattie was born, more than eleven years ago, I had achieved a state of almost equilibrium. Sharon and I were getting on really well. Work was going fine. I was managing people in work and getting projects in on time. I felt almost serene; nothing could faze me. My speech felt better [to me] than ever before. I recall going into project meetings, often in the chair, and feeling more than happy with my oral communication skills. I knew that I was going to 'bobulate' [as John Harrison puts it] occasionally but I had come to realize that it was not such a bad thing. And then Mattie came along to upset that applecart, and the impact on our lives was profound.

"Is there something wrong with Mattie", I said to Sharon in late 1994. Mattie had just turned two years old and I just 'knew' that something wasn't quite right. He seemed to have a larger than normal head and kind of 'old' features. Sharon admitted that she was thinking just about the same thing as well. In fact, Mattie transformed into one of the most beautiful kids I have ever seen.

From infancy he seemed to develop normally. Saying his first words at 18 months or so. I remember him coming up to me when I was filling a watering can from a tap in the back garden (Yard) and saying a complete sentence to me. Something like: "Can I have some more Water". It was as clear as a bell. But then he seemed to lose his speech. It was a gradual process. At the age of three and a half he had lost it all. Various doctors and specialists assured us that he was normal , but we somehow knew different.

Sharon: The time between suspecting a problem when Matt was a toddler and having it confirmed was very stressful. I always had the feeling that the professionals didn't really have any doubts about what was causing Mattie's difficulties. I have to say that the process of grieving and then accepting could have been easier had they been more upfront.

Having a child with undiagnosed behavioural difficulties puts a huge strain on parents. John and I questioned our parenting skills. Why couldn't we control this very small person? He was very hyperactive, a poor sleeper, picky eater and had communication problems. We had input from professionals, but at times it felt as though this contributed to the stress. These stresses had a negative affect on John's speech.

It took us a while to come to terms with the extent of Mattie's difficulties. At first we thought "oh it's just his speech, once that has improved he'll be fine" So the toddler years were rife with tantrums and frustration for all of us! Unfortunately the speech didn't improve, but of course there is much more to communication than speaking. We worked hard on turn taking and augmented communications. Luckily Mattie has quite good comprehension skills and is able to use a mixture of signs and PECS.

John: I did not cope very well with the fact of Mattie's autism and also, as Mattie progressed into toddlerhood, Sharon became very ill. The various worries and pressures I started to experience played havoc with my communicative abilities. My confidence hit rock bottom and this added to the worsening of my speech. I sank into a depression which lasted for many months. An interesting point to note here is that for years I had been subject to great pressures at work. However, those were pressures I could do something about, and when I did it gave great boosts to my confidence and self esteem with consequent strengthening of my communication capability.

The fact of Mattie's disability means that he has greater requirements of the education system. We are fortunate in that Sharon has excellent advocacy skills and uses them to great effect in getting Mattie the best available help. I was going to say that I have come to terms with the fact that Sharon is so much better at that sort of thing than I. If I am being truthful, however, I must say that I would like to take a more leading role in representing Mattie. This is probably due to the fact that I am very conscious of any avoidance tendencies I may have now.

In 1999 I took early retirement from full time work and started to have much more to do with Mattie. We have now become very close, although I do find Mattie's more manic episodes extremely disruptive of my personal equilibrium.

Some days I feel what I can only term as 'stuttery'. In those periods I feel more likely to stutter. I can alleviate the feeling by stress relief tactics but the fact remains that sometimes I do 'feel' more prone to stuttering than at others. I have no real idea what causes it; I believe that it may be a chemical imbalance. This 'stuttery' or general feeling of communicative instability can sometimes change with my mood. When Mattie starts being upset it seems to affect me in that way. If I am irritated about something, and maybe subduing feelings of anger, I get that same 'stuttery' feeling.

I know that most PWS describe periods of fluency when they are angry. They are referring to the 'letting go', when anger takes control.

Sharon: So now we have a non verbal autistic child. He is absolutely delightful. He is usually able to communicate to us what he wants, and his behaviour is much improved. He enjoys participating in lots of activities, for example swimming, cycling and trampolining, He attends an after school club, which is great, and goes to football, although he has no real idea what is going on. If everyone is running up the pitch he just goes with them. He seems to like running up and down with the others, so we just hope that one day the penny will drop and he'll notice the ball! He has a full and active life and is a very happy child. He nearly always has a big smile on his face.

There are obviously difficulties at home. He still has obsessive behaviours associated with his autism. For a non verbal child he is very very noisy. John finds it difficult to focus on his speech when Mattie is behaving in this way. Given that when John is stressed or uptight his speech is not at its most fluent I can appreciate how difficult this is for him. In the time I have known him John has been involved in several programmes aimed at helping him with his stammer. Probably all need the person to be able to relax, John has had loads to cope with in the last ten years. Relaxation has been difficult for him. I'm gong to persuade him to take up yoga in the autumn.

Sometimes I think John and Mattie have similar personalities. With both of them, when they are happy they are sunny and a pleasure to spend time with, but they both have strong personalities. There is often a battle of wills going on between them, and I'm never sure who will win! Their relationship has blossomed over the years. They have great fun together. They tease each other and John finds it easy to play chase and rough and tumble games with Mattie, which they both obviously enjoy.

I am aware that I have taken on the role of advocate. I am more than happy to do this, and although John does avoid meetings with professionals concerning Mattie he is supportive of me, and helpful in that we can mull things over together afterwards.

So does living with Mattie affect John's speech? Well it is harder to relax with Mattie around, and he does require a lot more attention than the average child. I think there could be gains for John's speech if Mattie did not have autism, but I'm not sure that there would be a fundamental difference. John gets stressed by all manner of things. That is his way. If we didn't have Mattie he would still get stressed, and it would affect his speech. I don't think that outside influences change your way of responding to things. John's stammer goes much deeper than what is happening at the moment, although what is happening does affect it. Obviously if everything is rosy and sails along smoothly there is less in life to stress one. However, having a child like Mattie does put the little niggles that could annoy into perspective.

I think John's perception of Mattie as an unknown quantity that he can do nothing about is changing. When something is causing you stress it's much harder if you feel there is nothing you can do to control and deal with it. Mattie's behaviours can be modified (with a lot of time and patience). Over the last few years John has spent more time with Mattie and their relationship has improved. John still stammers, but it's part of him. If Mattie didn't have autism he wouldn't be Mattie. He is perfect and complete as he is. The same goes for you John, if you didn't stammer you wouldn't be you.

John: What Sharon says about stress affecting my speech is only partially true. I would go so far as to say that I thrive on certain types of stress. By this I mean that if I am under pressure to achieve a goal, and that goal is achievable, then I anticipate a successful outcome, which lifts me and raises my self confidence/esteem. However, when Mattie is in a downward spiral, exhibiting what to me are uncontrollable behaviours, then I feel under stress together with a sense of sheer helplessness. At these times I feel anxious, depressed, angry, ashamed, a roller coaster, chaotic, emotional ride. These feelings have an extremely depressing effect on me which can quickly change my state from confident to 'stuttery'. At times I have a desperate feeling of not being able to 'do the right thing' by Mattie. This emotion, and the internal remorse I feel at times, shreds my self-esteem. I must say that these times are few and far between. He is coming up to puberty now. What lies in store there?

So what can we say about Mattie and me. Sharon and I love him to distraction. Most of the time he is an absolute joy to be with, but very occasionally he can be sheer hell, and I see parts of my personality in him, and for that I'm sorry.

Looking to the immediate future, my plan is to strengthen my own mental state, to toughen up and stabilise my mental pathways. As a first step I have enrolled in Yoga classes. I also intend to involve myself more in the 'management of Mattie'.

You can post Questions/comments about the above paper to the authors before October 22, 2003.

September 1, 2003