James Young

James is 13 ½ years old now. Time has flown since I wrote an article about him 5 years ago, which was published in the Autumn 2004 NZDSA newsletter and also put on the NZDSA website. James has Down syndrome, Autism and Coeliac disease and for some time now I have been meaning to do an update.

Until the age of 12 he was mainstreamed at the local school – Tai Tapu. He was very happy there and enjoyed the company of his classmates and being out in the middle of the football field with the boys playing football around him. But increasingly I became frustrated with the school, the teacher aides and the difficulty of making it work with a very intellectually disabled child in a mainstream school. In spite of a visual schedule to make sure that both the teacher aide and James remembered to send home his sweatshirt, glasses etc, regularly, something would not be sent home. Missing clothes is a fact of life with a child in junior school but I was no longer tolerant of it all given that James was now 12 years old. James was still not able to read and write nor say a simple sentence. He was not able to sit at a desk for more than a short period and increasingly when he was not in the target class with the special needs teacher he did activities with the juniors.

As he grew bigger I did not like seeing him do activities that were not age appropriate even though he enjoyed them. Also, he was very passive and was a watcher rather than a participant with t-ball and other games. Lastly, even though Down syndrome was the primary diagnosis it was the autism that caused all the problems. Autism teaching methods such as visual schedules and PECS - Picture Exchange Communication System were the way to teach James and I felt that the special needs teacher did not have nor of course did his own teacher have enough skills in this area to really teach James.

Over the years I have found the autism label really helpful. I had joined Autism New Zealand, gone to their conferences, done some of their programmes such as Early Bird, learnt PECS and put James in the Autism NZ holiday programme during the holidays for 3 days a week. There is enormous pressure on families with a child with Down syndrome to mainstream but the reality is that children with a dual diagnosis of Down syndrome and autism are better off in a special needs school. So when James was 11 years old I looked around at special needs units in high schools and special needs schools to work out where we should head with James and at age 12 he was moved into Waitaha Learning Centre, the closest special needs school. This gave me a certain amount of guilt but an enormous sense of relief to have him out of a mainstream school. Also, I had problems seeing all the gated areas and locks to keep the children secure at the Waitaha Learning Centre after the freedom of a mainstream school but none of that James noticed. He was happy to get into the taxi each morning and even though he took a while to adjust and was not very cooperative for the teachers for quite a long time, this was not a problem for them. Nothing was a problem for the school, they were positive about James and he is involved in lots of activities, such as swimming, all of this without my input.

James has now been at the Waitaha Learning Centre for 18 months and it has been a positive move. He has made minimal progress academically however he is now a participator in activities and games, not a watcher, socially is more confident and we are all working on the living skills we feel he is capable of mastering as well as PECS and communicating.

In the article I wrote five years ago I gave a definition of autism, which I want to repeat again.

“Autism means “self interest” and a person’s thinking is guided by desires and effects rather
than goal directed. It is a triad of impairments:

1. Impairment of communication
2. Impairment of social interaction
3. Impairment of creative/imaginative thinking.

These impairments go hand in hand with rituals, obsessions, compulsions and a dread of
change/anxiety along with sensory sensitivities.”

Recently I read another article in the Autism New Zealand Newsletter December 2008. There, in an article about structured play it talks about: “…choice, freedom and discovery are simply not the things that motivate children with autism to play the way their non-autistic peers do. Children with autism need structure because despite their many differences, in general they have impaired motivation to interact, learn and play. They have rigid and repetitive patterns of thinking and therefore of talking and playing and are often motivated to preserve ‘sameness’. Coupled with a resistance to being directed and a need to take control of as many aspects of their immediate environment as possible, it is not difficult to appreciate how being part of a learning and playing environment that advocates spontaneity, free choice and independent discovery simply is not appropriate for a child with autism.”

This sums James up beautifully. He is not motivated to learn to any great extent and he still is not able to play except at an elementary level. However, James has made progress in the area of social interaction.

He enjoys interacting with younger or older people; not his peers and often does not know how to interact. Opportunities to socialise, other than at school, need to be made for him as he does not seek interaction with other people other than with family members. Over the years he has become increasingly resistant to being directed. Mind you he is a teenager so why should he want his mother telling him what to do! Even his teacher at school is cast in the same mould as his mother – a big ogre for making him do things he does not want to do. However his father - Roger and older brother - Matthew as well as his teenage cousin Reta have more success at getting him to comply with requests and interact. He is very motivated to do the same thing day after day and particularly likes to watch videos, all day if he is allowed! Now I
want to go back to the previous article and go back through each of the following areas to see what has changed:

• Obsessions and Repetitive behaviours
• Communication
• Sensory Sensitivities
• Social Interaction
• Creative/Imaginative Thinking

Obsessions and Repetitive behaviours
He still makes his noises whenever he is playing by himself. Either he blows repetitively or whistles. If you tell him to be quiet he can only manage it for a short while and over time the noise changes but there is always a noise!

More than ever he does not like a change in routine and so his daily visual schedule helps him to be prepared for what lies ahead. However it is the little unexpected things that can be problematic eg if he is watching videos while we have visitors and then at short notice he is asked to sit with a group of people for a photo he usually will not comply without a fuss. We call him a “routine man” as he is very happy with the same food every day and the same daily schedule so long as his needs are met.

Communication
There has been an improvement in his comprehension of language and his communication using PECS but little change in his speech.

• Will indicate needs by pulling an adult’s hand to show the adult something
• Uses lots of single words eg. go, bus, Dad, Mum
• Uses phrases over and over eg “It’s OK”, “What’s that”
• Poor and infrequent use of 2 words together eg “Dad go”
• Is not able to say a sentence
• Can use his PECS sentence strip to communicate a sentence
• Frequently says “no” when asked to do something or waves his index finger in displeasure
• Is better at making eye contact with strangers
• Does read facial expressions and loves to watch Mr Bean – Rowan Atkinson
• Does understand the meaning of gestures or tone of voice.
• Language has to be kept simple and consistent when talking to him.

PECS is a wonderful tool for communicating and he uses it every day both at school and at home. He has a folder with all of his PECS cards that sits on the dining table at home and we are able to take it out with us. We believe that even though his speech will continue to improve, PECS will be the main tool for communicating throughout his life.

Sensory Sensitivities
People with autism can have a wide range of sensitivities to light, sound, people touching them, tastes, smells and so on.

Light: James is still sensitive to light. On bright sunny days he will not wear sunglasses but will wear a hat. At school he prefers to work in a little room which has no windows.

Volume: He is much better at dealing with loud noises eg fireworks and no longer gets so upset with loud music in a room full of people. He no longer has grommets in his ears and his hearing is fine so loud noises are no longer an issue.

Mouth: Five years later he still rarely tries new foods and when he does, it is put to his lips and spat out.

Taste: He has expanded the range of soft, cooked foods he will eat. So for evening meals there are a few more dishes that he will eat eg Mexican mince which is spicy. He still will not eat any raw fruit or vegetables so every morning I make him a fruit smoothie using rice milk and he still eats pizza every day, which has a variety of vegetables on it under a thick layer of cheese. He still will not eat biscuits or lollies, crisps or any other junk food with the exception of McDonald’s French fries. His diet is healthy, organic and gluten free. He is quite happy to have the same food every day and so his breakfast and lunch are the same, while we all eat a gluten free dinner together, which varies daily.

Social Interaction
James loves going out into the community, to movies, restaurants, swimming pools and on holiday with his family. But in situations where people are just holding a conversation with each other he will withdraw as he is not able to join in with the conversation.

When we have friends or relatives (with the exception of Reta) visit he will withdraw and
watch videos but will say goodbye when it is time for the visitors to leave.

• Does enjoy physical contact eg tickling
• Does like affection from others
• Difficult to motivate if he does not want to do it
• Does not like to make mistakes
• Can get quite anxious and beat his head with the palms of both hands if asked to quickly change from what he is doing
• Prefers to watch and join in when he chooses
• Often relates best to people older or younger than himself
• Is much better with waiting and turn taking
• Needs space to retreat to and still has to watch videos every day after school
• Does not have a friend outside of school hours apart from family members
• Is more comfortable out in the community with a small soft toy in each hand
• Loves going to other people’s places and to the Autism New Zealand holiday programme

It is encouraging that we can take him anywhere in the community and his behaviour is very good. In restaurants he will rise to the occasion and his table manners are better there than at home. He loves going on holiday and so long as his family is there and we do some activities that he enjoys eg going to the beach and I cook his favourite food he has no problems coping with the changes. It is great that McDonalds with its familiar golden arches can be found everywhere as he loves their gluten free French fries.

Creative/Imaginative Thinking
He has developed a sense of humour and it is great to see his enjoyment when he watches shows, comedians and certain movies.

• His ability to do pretend play is very limited.
• Will focus on a part rather than a whole
• Rules of play are difficult so will not participate most of the time
• Good at imitating videos and watches far too many videos!
• Someone has to play with him in order for him to be able to play with most things
• Loves to watch slapstick and loves Mr Bean

As he has matured he is able to watch and understand more age appropriate programmes and
movies and has developed a great sense of humour. However his favourite movies are primarily visual with not much language, which is why Mr Bean or any movie starring Rowan Atkinson is such a big hit.

Summary
Over the years I have realised just how autistic James is. Routine, structure and PECS plus visual schedules are the way to manage James and keep the household running smoothly. Overall, I think he is pretty happy and likes to do things with his family and have his family around him even if he chooses not to interact much. He is well liked at school because he is affectionate and will greet his favourite people with a hug. However he is also a passive person so does not cause behavioural problems at school unless he chooses not to cooperate. His sensitivities and repetitive behaviours are not a concern but the lack of communication can be a problem so can weekends and holidays.

If an activity is not arranged for him every day he will just sit and watch videos all day until someone literally pushes him outside to play and jump on his trampoline or swim in the pool. Thank goodness for the Autism New Zealand holiday programme. He goes three days a week from 9.00 – 3.00pm and this keeps him happy, busy and active.

James has a great sense of humour. He loves to have his mother on by putting his sweatshirt on upside down. He also loves watching people who do a lot of slapstick or as with Mr Bean who does not say much but uses body language and facial contortions to communicate. Mr Bean has James in hysterics and at Christmas, Santa gave James all of the Mr Bean DVDs and Matthew all of the Blackadder DVDs.

James has grown considerably, this year I think he will be the same height as me at 1.6 m. However already he is heavier than me and also a solid build. Fortunately Matthew and Roger are both 1.8 m and big people. So if we out in the community they are able to physically manage James, if necessary.

We now focus on the living skills at home and at school that James needs to acquire and which make my life easier. The day to day skills are often the easiest to teach him because they are repetitive and often just done without people saying much and as he is very much a visual learner there are plenty of opportunities for him to see how to do something.

Also, we focus on the things that we enjoy doing as a family with James. The most successful outing for our three boys is to the beach or to a pool with a hydro slide. James is very competent in a pool although he is not able to do freestyle.

Roger and I are pleased by the way James is maturing into a healthy and happy teenager and that he continues to make progress, albeit at his pace!

Submitted by Kaye Young.