GoingRight
Autism, or Autism Spectrum Disorder (ASD), refers to a broad range of conditions characterised by challenges with social skills, repetitive behaviour, speech and non verbal communications.
A few days after Christmas, younger daughter and her English husband visited us and let us know their decision to go and live in the UK for a period of time, 2-5 years. Naturally it was a surprise as our daughter has always wanted to live in New Zealand, and as they had a sweet 20 month old daughter who would obviously go as well it was a bit of a shock, not that we conveyed that to them.
On Christmas Day our older daughter (both our girls are early childhood teachers) and the whole family met at our younger’s house as they decided to do a barbecue Christmas. We sat outside and were watching their daughter play, and she did something which made both of us look at each other.
For many months we had been intrigued with her development. The child was different from our other four granddaughters, in that even at 20 months she rarely looked at anyone, she had a passion for picking up cars and spinning the wheels and she liked to run round and round in circles around a table or larger area. She was also developing meltdowns. Was this a two year old tantrum or something else? There appeared to be no reason for them starting.
She had no speech, didn’t voluntarily give hugs, and didn’t point. She disliked being read to, but liked looking at books by herself. She was almost in a world of her own, and happily played by herself. Luckily our eldest and I compared notes and were pretty sure the child was autistic (which I suspected when they told us of their plans to go overseas, but said nothing as I didn’t want them to think I was putting barriers in the way of them going).
Our eldest then sat down a few days later, told her sister that she had her early childhood hat on and asked her if she had noticed any signs of delay in her daughter’s development. It was a real shock to both the child’s mother and father, but on the whole they accepted this very well indeed and immediately looked at what could be done.
We encouraged them to get help as soon as possible and get her tested and into the system with the hope that there would be some help. Amazingly she since Christmas has had her referral by the GP to the paediatrician, who after part one of the test confirmed that she was autistic. However, as they were going to the UK he knew they would need the full assessment and the level of autism she had. So an ADOS (Autism Diagnostic Observation Schedule) test was booked along with a hearing test. We know she is not deaf.
It seems to depend where you live as to how quickly you are able to access the testing of a child. Auckland seems to be very good, or maybe it was the fact they were going overseas and the delay in getting tested in the UK is quite long, we understand. In the meantime I found a wonderful private organisation in Acorn Autism in Remuera. They offer therapy for young children 2 to 6 years old, and it has been stressed on us from the research I have done that the sooner you get involved into some sort of treatment with assistance with speech, behaviour, and the management of the meltdowns and social play, the better the outcome.
She started with 2 hours a day four days a week, but after 6 sessions the lockdown occurred, so the clinic rang for half hour consults twice a week with our daughter, and that was at least some support, and some progress has been made. The ADOS test was postponed and in fact happened earlier this week with a result of moderate to high level on the autism spectrum. However it was mentioned that no one knows how dependent she might be, or how intelligent she is — it is advantageous if she is bright. The feedback from Acorn Autism is that she is a fast learner, so that is positive. We are so grateful that this place exists. In the USA 1 in 55 children are diagnosed with autism and so we assume the numbers here would be similar. This number has increased from 1 in 500 in the early 1990s.
Whilst I realise the pressure on the government for funding, if early intervention can make the difference between some children becoming independent rather than dependent on the state, surely spending some funds to assist the progress of these young children would be worthwhile.
It was also interesting to me (a retired nurse) that I didn’t diagnose this problem, as I really know or knew little about autism. What is an even bigger worry is that early childhood teachers are not trained to pick this up. Our eldest only did as she did psychology papers which included child development at uni along with later on taking up early childhood education as that fitted in better with motherhood.
The other gap in the system in my view is the practice nurses when they see the babies for their check ups and jabs. Even just looking at a child to see if they look back at them would be one clue that there may be a problem. The last area I felt they were let down by was the Plunket nurse who apparently did a 15 month test. She didn’t pass one part of this but the nurse didn’t feel it necessary to call her back a little earlier to see where the development was going.
All in all there are many areas where improvements in knowledge could occur, not least parents and grandparents who notice these things. For that reason I have tried to itemise some of the things she does and some of the things she doesn’t do, as it may help spread the word.
She is not at all interested in dolls, or giving them cuddles, or putting them to bed or feeding them. In fact a couple of months ago our daughter put the pram out into the garden with the doll in the pram and the child spotted it and immediately went out and started pushing the pram. My daughter thought, oh that is good, some connection with the doll, but no, the child is extremely tidy and knew the doll’s pram belonged in the garage and so wheeled the pram into the garage and placed it where it belonged!
She also spends quite a bit of time studying how things work and has been doing that for quite some time. She loves her puzzles, takes around 5 puzzles out at a time and pulls the pieces out, then is able to put them all back in the right place even though by this time the pieces are all in one pile. So it is a complicated world these children live in.
Some autistic people think in pictures, as Temple Grandin does and thought everyone did. She is an incredibly intelligent person, has autism, has designed improvements for the livestock industry and lectures at the Colorado State University, USA. She also is an autism spokeswoman. From time to time she lectures parents of autistic children and is very interesting to listen to. Some years ago a film was made of her life and her development with her autism.
So what we want is a comprehensive state system to assist children like our granddaughter, who has now turned 2. There may be some one off funding available but I am unsure what it is and certainly it is nowhere near what is required. She is perhaps more advantaged than most as we are funding this programme that she is in. So far, since our granddaughter had the first part of the ADOS test, our daughter has had one phone call from the nurse associated with the paediatrician, and the nurse explained to our daughter not to get her hopes up.
The help available is apparently a course to teach the parents how to manage the child. Our daughter feels that time should be spent in the child’s home or at early childhood centres, where tuition can be given especially to the family. Either way, the government needs to look at this growing area where a difference can be made with the right resources.
I am aware of a programme started in Wellington, and I believe Auckland will at some stage also get a similar programme, where therapy through play is taught; however, there are so few places. If it is working then again more funding should be added to extend this programme. It is a relatively new situation which is now part of our lives, so we have lots to learn re the funding and also we are not aware of every service out there. We just know that a lot of the work falls on the parents, who may or may not understand what they are supposed to be doing to improve the future for their child.
This course teaching the parents is ok in part; however, since level 2 she has been back at Acorn Autism, taught by experts in their field for four days a week, two hours a day, and the therapy being given is extraordinary. It is one on one each day and the child is racing ahead in leaps and bounds. It takes time for her to learn these new skills, but the improvement is noticeable with even more sounds appearing, so God willing, she will one day be able to speak.
It is heartbreaking for her parents not to get the usual Mummy, Daddy and lots of cuddles, or handing toys to show them. We salute them for the way they are coping with this unexpected diagnosis of their precious wee babe. All the family are supportive of this child and her parents, and we love them all to bits.
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