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Update from Alan Phillips
March 2005

Greg is now 22 years old. Naturally people are curious and want to know how Greg is doing in his life. But what surprises me is that hardly anyone ever asks questions such as, ‘Is he happy? How have you helped and empowered Greg to access the world, well at least as much as he wants to access, beyond the limits that his autism imposes upon him? Are you happy? What is the quality of your family life?’

Personally I value these things more than what we have achieved with our son academically. I still believe that if we prioritise and value Greg’s happiness and help him to function in the world to whatever degree he wants, we will all enjoy a better life. Academic learning has its place, but not at the expense of Greg’s functionality and reaching his potential as a human being.

There is definitely a place for academic learning, and over the last couple of years I have come to appreciate the benefit of covering all bases and how certain activities help with development, but I would still say you need to prioritise by identifying what your child needs the most and what will make the most difference to him and consequently to family life.

I think common sense should always prevail over a curriculum, but there is no reason why you should not have both. There can always be a transfer of emphasis to more academic learning at the appropriate time, but give me a happy child, and one who is more comfortable interacting with the world and more confident accessing the world beyond the limitations of his autism, any day over a child with academic strengths but who is perhaps more of a prisoner to his autism—making us all prisoners.

I want freedom for Greg: freedom for him to be able to do, as far as possible, what he would like to do and not to be totally controlled by his autism.

Having said that, I also want to respect Greg and his difference. This means that if Greg also sometimes wants to choose his autism—and I have no doubt he likes part of it—then I want the good grace to accept this. So it is really about acceptance of Greg’s difference and empowering choice—Greg’s choice.

I think this is where I left Greg’s story in the Paths book, with Greg having a foot in either camp—a place I am still comfortable with.

I also understand the link much better between how Greg is feeling (health-wise, including underlying biomedical issues) and how this greatly affects his autism and emphasises its characteristics.

As a consequence, on certain days Greg may appear far more autistic, being far more closed down and appearing more sensitive (particularly towards sensory issues), more withdrawn and tentative or even fearful.

Greg actually seems to rely on his autism at certain times, perhaps as his way of dealing with some hidden health issue (which could be the onset of an illness or a biomedical issue). I think this needs understanding and consequently some days you don’t have to feel you always need to teach something, but place even more emphasis on understanding and supporting him.

Over the last couple of years, and increasingly so lately, Greg demonstrates that he does want to access much more of our world.
I feel in some ways that he may and probably does get fed up with the restrictions and repetitiveness that his autism imposes upon his life.

I did hope that the world would learn to be more accepting of difference, but I am not so optimistic now. Generally speaking, the world is just not ready to accommodate difference with people like Greg. Therefore, if Greg wants to access more of the world, it requires him to modify certain extremes of his behaviour.

I think this has required movement and accommodation on both Greg’s side and ours, but Greg has had to learn to fit in if we are to make this work together and offer him more of what he is wanting. This at first might sound outrageous, as I am suggesting that Greg needs to assume some responsibility, but I no longer see autism as this all controlling condition.

Sometimes it is challenging—well, quite often it is challenging—to find a way through for both of us, but with a spirit of wanting to at least try and beginning from a place of understanding, this has been a way of approaching autism that has empowered all of us. I am reminded of the quote by Langston Hughes: Hold fast to dreams, for if dreams die, life is a broken bird that cannot fly.

I think this reveals even more recent changes in the development of our philosophy: understanding that behaviour can exist alongside autism, and whilst it may well be true that being autistic meant that Greg might develop certain behaviours, I consider that nonetheless they may be looked at as something separate from autism.

Without doubt, Greg has learned through the years that he can control us through his behaviour, but we all have to learn to live together. As Greg’s parents, we too are entitled to a life where we can experience and enjoy peacefulness. It has been empowering to help Greg express himself without the need for him to resort to extremes of behaviour. This has made life far more pleasant and means that Greg can enjoy more and more experiences.

We are not looking for Greg to be perfect, but I think utilizing patience, love and understanding together with determination and a clear goal of wanting to show and model to Greg a positive alternative way that he can express himself has made life much better for all of our family and the people who help us. It also means that people are more amenable to Greg. We want him to be liked by other people because it opens more doors for him.

Greg continues to participate as a volunteer working part time at Critters Farm (now in his fourth year) and he has gradually increased his skills there, contributing in a very small way but nonetheless I think it is important because it enables him to experience something of that feeling of being valuable to others and society.

He enjoys being out and about in the community a lot now and is steadily increasing his confidence, even if he does require support wherever he goes. We have found the combination of Direct Payments and ILF (Independent Living Fund) a godsend in enabling us to pay for a dedicated team of people who are really fond of Greg and share with us in our motivation to want to help him. We were first in our area to develop this; we seem always destined to pioneer and not have a precedent to follow.

Lately, due to Greg being far more motivated and available and willing to try things, more so than at any other point in his life, he is therefore easier to teach and work with. This has also opened up more of the world of academics to him, which is now a far more meaningful and appropriate exercise than it ever was before.

We are currently re-exploring augmentative communication techniques, because Greg can request verbally what he wants (principally his needs), but finds it hopeless to develop his conversation and communication skills beyond that using language. His understanding of language is far stronger. Given his history and where he was on the spectrum, his understanding is developing in ways we never believed possible at one stage and defies his prognosis.

What I am constantly learning is that you cannot judge a book by looking at the cover and Greg has far more intelligence than might be evidenced. I am really not sure about this term ‘low functioning autistic’ or rather I am inclined to believe it is a statement about society and the fact that we have not found the way to understand and significantly help these people yet.

Encouragingly he is reversing a lot of the stereotypes of severely autistic kids. I love how he is developing a strong beginning of theory of mind, often demonstrating thoughtfulness and consideration. For example, he may let the dog in or out if he sees he needs help; or how carefully he moves things that belong to us to a safe place before sitting down—little things I know, but to us not so little.

There is a story about Greg that Dr Utah Frith uses to explain theory of mind that I have seen in a couple of books, which reveals where Greg started from: Greg would lose his cool because he was pointing up to the cupboard for someone to get him a biscuit, but no one responded. Unfortunately, Greg didn’t realise that there was a brick wall between him and people, so when he pointed, how were we to know what he wanted or that he even was wanting something? This resulted in him banging his head in frustration—yet in his mind he was not able to make that connection and see the world from another’s perspective (theory of mind)!

However, now is a different story: it is so funny to catch him cheekily attempting to sneak something out of the snack drawer—very carefully and quietly opening the drawer so no one will hear him. However, he is still sweet and innocent, because when I catch him in the act and ask, ‘What have you got there, Greg?’, he will say ‘chocolate’, so he hasn’t developed theory of mind to the degree of telling fibs just yet!

If ever I had my wish to know if Greg was happy and that he loved us, we are starting to see plenty of evidence of this now. To see him spontaneously run to catch up with his mum and to see him lovingly hold onto her arm and deliver the most beautiful smile brings a tear to my eye.

Perhaps it will only be understood by parents who never thought things like this would happen with their own child, especially if they were severely autistic like Greg, and it is amazing what we can take for granted in life.

It is also an indescribable feeling when Greg waits for me and again lovingly takes my arm because he wants to be with me and close to me. He is doing things like this all of the time now and it is so far away from the time when Greg would only come to you if he was tired and needed picking up. We couldn’t even hold his hand, he was so unaccommodating and limp.

I remember one Sunday afternoon when Greg was about six years old and we were out for a walk along the canal tow path. Greg had kicked off his shoe at some point, but I hadn’t noticed. It was a freezing cold winter’s day, and his sock was so cold and sodden with mud, it must have been terribly uncomfortable, yet he could not even ask for help. He was so removed from our world that I was not sure he even noticed his shoe was off. I picked him up, turned round and it was a hundred yards or so until I found his shoe. It was probably at this point that I realised how very vulnerable Greg was and I was really afraid for his future.

We have waited a long time, but that warmth of human contact from him is so strong now. Actually, when I think back to the tow path incident, it was at the same time that we were battling the education system to gain the support and understanding that Greg needed and also the medical system, who would not even give us a diagnosis and even tried to persuade us that Greg was not autistic.

I shudder to think about how we coped then. It seems like a different lifetime now—almost like a parallel universe where we had no control and felt isolated, lost and without hope. Now we have the very opposite!

From our work with Greg and also my job as an autism consultant working with other families all over the country, we have found it is possible to develop very effective attitudinal and educational programmes. This has been principally for home educators, but it is something that I wish schools would also think about developing.

The basic premise seems to work well with children at both ends of the spectrum. We keep one eye on the key areas where a child or young person requires focused help, and at the same time empower parents with knowledge and organisation skills. In this way, it is possible to offer a balanced curriculum where educational and skill development goals can be tied in with a desire to make learning interesting, stimulating and purposeful.

I am also very keen on developing meaningful activities and projects which would make learning real and digestible to students—something they could relate to and would find useful.

The curriculum we use is very much more sophisticated now, with activities and goals all offered in the correct developmental order and providing a rich well of activities and ideas. It is based on thorough assessment first, and because it is computerised, we can track progress precisely and therefore determine whether strategies are effective.

This is really effective, and particularly so when married to the attitudinal approach so we make teaching fun, take careful note of a person’s interests and motivations and incorporate this into the learning activities. I call this going with the flow of the river.

Over a good many years, like a fair few parents, I have researched and studied autism—virtually non-stop for almost twenty years now. During this time we have seen many fashions of theory and practice come and go.

It started with feeling cheated, despising Greg’s autism and wanting to ‘cure’ our son of his autism, through to totally accepting Greg and now finally this more pragmatic view of wanting to see Greg free to choose his autism when he wishes to, while also empowering and supporting him to access our world when he wants to—from passive acceptance to empowered acceptance.

Anyway, to answer the opening questions: yes, I have never seen Greg so happy, content and at peace with the world. Sure, he has his off days—or even periods lasting a week or so—but usually these are eventually explained by something medical, as I’ve already suggested.

We as a family have also never been so happy and content. We really enjoy Greg’s company and I think we have a reasonably good family life—well, most of the time!

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