Families who join Daslne will receive newsletters twice a year.
We are very grateful to Azure for the printing of the Daslne Newsletter over many years.
Azure provides a wide range of services to people with disability throughout the North East. Their mission is to “Improve the lives of people who are disabled or disadvantaged”. Azure has a number of Supported Businesses that provide employment and training opportunities for people with disability. These are Azure Garden Centre, Azure Printing, Azure Nurseries, Azure Landscapes and Azure Rolawn.
Azure, Units 1 F & G, Pegswood Industrial Estate, Pegswood, Northumberland, NE61 6HZ www.azure-printing.co.uk
We are also very grateful to The Hextol Foundation for providing assistance over many years with distribution of the Daslne Newsletter.
The Hextol Foundation aims to improve the lives of people with disabilities and other disadvantages by creating opportunities to work, by providing education and training and by developing other forms of support as are needed. Hextol are a registered charity, providing a range of local, accessible employment experience and associated training and support to local learning disabled people in our community.
The support Hextol receives really makes a difference to the lives of their trainees.
If you’d like to find out more, call Hextol on 01434 605253 or email:- contact@hextol.org.uk
The Hextol Foundation, 14c Gilesgate, Hexham, Northumberland, NE46 3NJ www.hextol.org.uk
New Hope North East Interview, October 2016
An autism diagnosis – a parent’s perspective
I think I had perhaps always known from a very early age that there was something that I could not put my finger on yet he was my first child and perhaps I was just an over anxious mother. Looking back there were certainly subtle clues or maybe not so subtle that my child was different. Our first outing in the snow didn’t turn out as planned and we returned home with a screaming child, a weepy mum and a bewildered dad and then there were the birthday parties which were always cut short or spent in a quiet corner away from other children.
Certainly the arrival of a second child confirmed that my child was not the same but I had never uttered the word “autism” to anyone, not even my husband. The day I received a call from nursery asking to have a chat I remember speaking to my own mum and asking “do you think he has autism?” and almost expecting her to dismiss this at once. But of course she didn’t, and in fact had spoken with my sister about their own concerns as both looked after my child.
It was no surprise that after a number of assessments with the local paediatrician we were given a diagnosis of Asperger Syndrome and we went home as a family to find out as much as we could about it. The diagnosis was given on his first day of nursery and having had the appointment in the morning I took him in to his first school that afternoon with a huge range of emotions.
Reading my first book about autism was a relief and now understanding that my child’s behaviour, picky eating and intolerance of certain situations was not due to my parenting skills but that it was a very scary world for him and I needed to support him as much as I could. A diagnosis for our family was a door opening to answers and we were now making sense of his funny “xxxxisms” as we called them.
It’s a steep learning curve and one you are on indefinitely as we are still learning new things all the time and making mistakes when communicating as he often takes things literally and you don’t realise until its gone wrong how it can be misconstrued. We’ve also had lots and lots of laughs along the way and are comfortable with who he is and he with who we are. He knows about his diagnosis and for him explains a lot about why he feels different and why sometimes he finds things more difficult than others.
A Parent’s Personal Account
We always knew that our son was a bright but sensitive child and at first school he was considered able, but shy and reluctant to do anything that would put him in the limelight. Yet he thrived due to fantastic staff in a small school setting that knew him well.
At the age of nine, he moved on to middle school where everything changed. He had to cope with getting the bus to school, a plethora of different teachers, moving classrooms, packed, noisy corridors, having to organise himself and worst of all, losing old friends and the expectation of making new ones.
Within weeks we were called to the school to be told ‘he was the most awkward child I’ve ever had to teach’ by his form teacher and SENCo. This was devastating news for us as parents. We had to listen while she described how he disrupted the class with his crying and how he was stubborn and would not talk to the teachers. The lack of sensitivity and understanding was astounding. We were advised that the educational psychologist needed to be brought in as a matter of urgency and we agreed.
With some trepidation I met up with the EP and I showed her a list I had written; why I thought my son was upset. She took the time to read it all and gently suggested that he was autistic or had Asperger Syndrome. I was shocked, yet not surprised. Only, all I really knew about autism was from Rainman and the little I had heard about Asperger’s was gossip and very negative. I was very shaken and left determined to find out more about it.
I bought Tony Attwood’s ‘Complete Guide to Asperger Syndrome’ and read it through from start to finish. I started with an open mind but as soon as the author described, with affection, the characters within the book I immediately recognised my son. The most obvious was the long monologues that I would get about his favourite subject, regardless of whether I showed any interest in Pokemon or not.
I found myself in tears throughout much of the book as it became quite clear to me that my little boy was now being lumbered with a disability and may not be able to lead a full life. However, as I read on I made a startling discovery, that not only was my son on the autistic spectrum but that it was hereditary and that it was extremely likely that the man I had married was on the spectrum too.
This threw a whole new light on the situation. One moment I had been in the depths of despair the next I realised he was just like his dad and he had managed to get through school and have a successful career. It took over a year to get a proper diagnosis for our son and even longer to get the school educated in which were the best ways to help him but we started to see a marked improvement in his school work and happiness.
A Parent’s Personal Account
Just replying to the question in your email about what it's like to get a diagnosis of ASD for your child.
Relief! That would be the main emotion.. that there IS something there, and it has a name, and can be helped.. gratitude for my child's CAMHS nurse for taking such care with detailed case notes to enable the consultant to make a speedy diagnosis.
Glad that I have had several mental health problems over the years, so that I am more able to understand what makes my child tick.. I can empathise with his feelings, and have no problems with his behaviour. We haven't had a 'meltdown' for 2 or 3 years, because I understand - the last meltdown was due to someone else just not understanding the condition, and teasing my son, which he found intolerable.
Being relaxed around him helps - if he wants a toy washing because it has briefly been dropped on the floor and is therefore 'contaminated', it's no problem. He trusts me implicitly, and knows that I WILL wash said toy, and not just pretend to clean it, or worse, reason / argue with him.
The diagnosis probably made me more protective of him - obviously a good thing, but it sometimes makes me mistrustful of people who have professed to have his interests at heart, when my intuition is screaming at me that this person knows nothing about ASD, or if they do, they generalise, whereas children with ASD are just as unique as anyone else!
I will fight to get my son the right thing for HIM.
He's lovely, funny, and I wouldn't have him any other way.
I am writing this blog to share our experiences of family life with autism (ASD); and also to talk about taking part in the DASLNE project and how this has helped me.
Our son, M, was diagnosed with ASD at 3 years old. M started missing developmental milestones around 2 years old, most notably his speech and language skills which were almost non-existent. With the benefit of hindsight and the knowledge I now have, it was obvious that M was presenting as autistic but I had no idea at that point, and although I denied it, I knew in my heart that something wasn’t right. This was the most heartbreaking time of my life, and after a straightforward diagnostic process (which I know isn’t the case for many other families) it was a huge relief when M was diagnosed with ASD. M was attending a mainstream nursery at this point: despite the school’s best efforts was a really stressful period. It was obvious that M could not cope in a mainstream setting, I felt like the leper of the playground, pitiful glances from other parents as M ran out onto the road, not responding to me; or dropping his pants for an impromptu wee (we are now experts at dealing with situations like this!) We are very lucky that M now attends a wonderful special school in North Tyneside. He skips off to school each morning (even getting his uniform out on a Saturday!), and I know that he is receiving specialist support and is valued and challenged every day, which is such a relief to me as a parent.
How can I describe M? He is the most gentle, energetic and (mostly!) happy little boy you will meet. He loves any form of transport but especially trains, parks, the beach, soft blankets, balloons and iced buns. I would be lying if I didn’t say that life can be very challenging because of autism, there have been many awful moments, but when we get some eye contact, a word, or one of his ear to ear grins, it is the best feeling in the world. I would give anything to have a conversation with M, or for him to tell me how he is feeling, things that most families would take for granted, but that feels like a long way off at the moment. Going out with M can be challenging, but through experience we have learnt what works for M and what doesn’t: for example going to a funfair would be sensory overload for M, with all of the lights, music and people. M loves to be outdoors, so we spend a lot of time in parks and at National Trust properties, which we find just works for us. Many attractions also now offer special early opening sessions for people with autism which is so useful- we recently went to the Great North Museum and the Baltic during October half-term.
Following M’s diagnosis, I decided that I really wanted to support research into autism. I personally feel that research is the best way to enhance both our understanding of autism, and the life experiences of people with autism, and their families. With this in mind, I joined DASLNE, a research project which maintains a confidential database with the primary aim of providing accurate information about the numbers of children living with ASD in the North East. DASLNE also links parents and professionals, sharing knowledge and information on autism. DASLNE is supported by the Children’s Foundation. I received information about joining DASLNE at M’s diagnosis meeting, and I decided straight away that I wanted to join. I think it is so important to have accurate information on numbers of children living with autism, to help with planning service provision for example. To be honest I was quite surprised that this information wasn’t collected by the NHS or a similar organisation anyway.
I have also joined the DASLNE Parent Advisory Group which meets quarterly and is an opportunity for researchers to connect with parents, to ask their opinions on various issues, e.g. requests to participate in research or mailings to parents. As a member of the Advisory Group, I feel like my voice is being heard and l have also found it really valuable to meet other parents who are facing similar challenges to me. It is also useful and interesting to receive various newsletters and updates from DASLNE via email and their Facebook page; it is hard to keep up with joining different mailing lists independently.
M enjoying the sensory rooms at the wonderful Alan Shearer Centre.