Real Life

Autistic Spectrum Conditions and Neuro-Diversity: For some the hard road to diagnosis

Date: June 4, 2013 Author: admin Categories: Real Life 2

 

The 1st in this 3 part series of blog posts, The Daily Toddlers guest blogger Shifting.Ground discusses Autism, living with an Autistic family and the challenges and judgements that brings.

“Autism is an often misunderstood condition, the symptoms can range from being very severe, where the person is very reliant on others, or relatively mild and often undiagnosed. ASC is a developmental condition affecting the way the brain processes information.

People with autism have problems interacting socially and making sense of the world around them, often becoming bewildered or panicked by the apparent disorder of everyday life. But though it is a complex disability, people with ASC can be helped to reach their full potential with the support of their carers and schools.

What autism specialists do know, however, is that early diagnosis and intervention is important – an early diagnosis will ensure an autistic spectrum child receives the specialist support they require, thus maximising their chances to reach their potential in adulthood”

http://www.netmums.com/support/special-needs/autism-aspergers


Part 1 – The hard road to diagnosis

We have three wonderful children, unique as all children are and two of them come with some rather particular characteristics.

danda the makeup of neuro diversity

Recently I found this diagram and broke into relieved laughter. Here it was, the information map I wish I’d had ten years ago. The one I could have taken to the four hospitals, two mental health services and scores of appointments our eldest child was referred to over the years to make sense of something no one seemed able to join up. The jog that might have nudged them into considering his unusual traits and behaviours weren’t something he was ‘going to grow out of’, wasn’t him ‘being difficult’ or because ‘he’s trying to get attention’ but fell within the range of neuro – diversity.

Due to a lack of specialists in one place we were referred to different London hospitals, often simultaneously and unfortunately at other ends of the city from each other. I thought about the letters sent by the doctors to each other complaining about the disjointed approach we were receiving requesting would someone in authority please stream line it for this family, no one wanted to take responsibility so getting ‘joined up’ didn’t happen. In those days we seemed to be waiting for someone to tell us what it was all about, what was to be done, who we should be sent to next – after all they were the Experts. Years later my image of our journey to diagnosis is more like a scene from the Keystone Cops, the early silent comedies where the joke was them being unable to pin down the culprit, a clumsy system of bumping into each other, failing to identify ASC if it didn’t easily fit into a checklist, not looking at the child as a whole, clearly not talking to each other and certainly not talking to us. But looking back I don’t find much to laugh about.

http://www.danda.org.uk/pages/neuro-diversity.php

I recalled the long treks and tiring waits for appointments we’d taken it in turns to attend until it became apparent one of us needed to give up their job as our son developed an unusual amount of medical and behavioural problems, when being there for him became the clear priority apart from there being little time for career between the hospitals admissions and merry-go-round of inefficient appointments. I happily volunteered for this, zealously believing the intervention being offered was being ‘helpful’ whilst we put on a front to each other we’d manage the financial hit of going down to one income and whilst his medical conditions were well treated we were left with a nebulous explanation of ‘BESD’ (behavioural, emotional, social difficulties) being told at one point ‘not even mum and dad’s cuddles could take away the pain as he hasn’t attached properly but don’t worry we think you’re part of the 10% of children for whom its caused by discomfort not neglect’. In those days I thanked them profusely for not thinking we were the cause of his problems then went home and cried, heartbroken at being told as a mother I hadn’t been able to comfort my son and in sudden fear someone had thought we hadn’t loved him enough. Now I campaign against this way of thinking.

For ten years our son plodded around this cycle of medical conditions and high anxiety triggered by something we couldn’t pinpoint until I stopped believing the experts knew best, started questioning why we weren’t getting anywhere and started taking control of the situation ourselves.

We’d experienced two different systems – medical and developmental – with an interesting contradiction. We found medical staff sympathetic, considerate, helpful and reaching out in their desire to offer empathy and support but I was mystified why it felt less like empathetic care and more like judgemental opinion when asking for advice for behavioural issues. We were left with the impression health providers didn’t fully understand what they were dealing with and when you’re looking to them for answers this was not a good start. I began to think it wasn’t just a lack of understanding but a lack of funding, having little to offer unless a child was so severely on the spectrum or causing a headache in the class room that ignoring it just wasn’t an option.

Autism affects over 1 in a 100 people. With a population of 273,000 people in Brighton and Hove (ONS 2011) this equates to 2,730 people in our local area needing access to local, specialised services for autism. Add to that support for their families. So I wonder why on earth this diagram isn’t in every doctor’s surgery, hospital, school and child development centre. Maybe workers are given a copy on day one of their training but sadly I doubt it or so many parents wouldn’t be struggling to get their children’s needs recognised and adequately supported in schools and health services. A simple little diagram making sense of what is, let’s face it, a hard set of conditions to get a handle on and which many workers still can’t spot, don’t understand or even believe that some of these conditions exist which in 2013 is rather concerning.

This is a journey of understanding for parents and practitioners and I wish I could say it was straight forward, thankfully for some it is, but it needs to be made easier for all families. For us it’s been more an epic crawl on our hands and knees through illnesses, clinics, hospitals, insinuations about our parenting in the now epidemic need to assume emotional abuse, lack of ‘attachment’ or even Fabricated and Induced Illness and work backwards from there, our tireless requests for help, the fear of holding a child in chronic pain only to hear no one knew what to do but offer a pain killer, feeling batted away from schools and services that weren’t helping but hindering, the financial strain of paying for help because nothing else was out there and the lost opportunities to have asked sensible questions instead of ‘did you pick him up when he was a baby?’ this, having just explained I’d breast fed on demand for over a year, my boobs in those days being located in the upper region of my body. It was only by child three I could lean from the front of the car to the back.

The wonderful thing is that with the right intervention at the right time ASC children don’t have to suffer with mental health illnesses such as anxiety or depression. With the right adjustments and accommodations in mainstream schools ASC children can be supported to make better sense of life and develop the social skills necessary to reach their potential. It took ten years for us to understand what we were dealing with and that the autism spectrum is just a different kind of same. Our son is now a happy, healthy teenager, thriving socially at school thanks to us taking control and this only started when we got an accurate diagnosis.

Blog post by Shifting.Ground, June 2013

 

More Information:

mASCot
Supporting families with children on the Autistic Spectrum
http://www.asc-mascot.com/

mASCot enables families to connect and meet others in the same situation as themselves. We are all families from Brighton and Hove and we all use the same schools and services. The support we get from each other has been a lifeline for some of our families and now mASCot has become the strong support network that we all needed but wasn’t available to us locally. The group is particularly keen to reach out to new families who are looking for support or advice but are unsure of where to go.

National Autistic Society
Helpline: Call 0808 800 4104
nas@nas.org.uk

 

Read part 2 ‘Autism and Vegas dont mix’  >>>

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2 Comments: "Autistic Spectrum Conditions and Neuro-Diversity: For some the hard road to diagnosis"

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