Tag Archives: diagnosis

The Effect of Delay in Autism Diagnosis

We’ve been asking parents to share their experiences with obtaining an Autism diagnosis for their child and the effects that delay can have.
In this article one family tell us their experiences.
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“Our daughter never slept easily. Midwives, health visitors, GPs, all offered advice and we tried everything. Our health visitor finally advised me to have one night a week in a hotel to save myself. Our daughter was apparently thriving, despite the lack of sleep, and no one had any other suggestions or reasons why.

Going into toddlerhood, cuddles were hated, eye contact wasn’t comfortable and things had to be a set way, e.g. the right plate, fork and spoon, sandwiches cut neatly into squares and on the plate in a specific pattern. However, speech was well developed, she practically taught herself to read fluently by age 2 and a half, and she could identify and add numbers ridiculously early. The nursery school were astounded and heralded her as a genius – so what that she preferred adult company and had some quirks? By this time her younger brother had arrived and he did elicit a closer relationship, rough and tumble, eye contact, etc. We didn’t worry.

In the first year of primary we noticed an increase in tics and obsessive behaviour. We mentioned autism, but the class teacher asked “why label?” and we decided to watch and wait. The teacher was particularly good at explaining why rules existed, why, in an emergency; our daughter couldn’t do her buttons up in a set order and take her time in the way she liked. Our daughter apparently thrived, becoming sociable and less obsessive. It was a classroom environment and teaching style that suited her – had it been different, we might have seen problems earlier, who knows?

As primary progressed we saw increasing abdominal pains, later diagnosed as infant migraine. We now know it was likely due to the level of stress she was carrying. Academic progress was exceptional until the junior classes, when she seemed to stall. It was put down to focusing on social interaction, later to laziness – always the argument was that she was a high achiever, she’d catch up easily when needed, she was already so far ahead it wasn’t important. Writing became a problem and we (at home, via support lines, and Google) diagnosed dysgraphia. This seemed to explain a number of ‘symptoms’ we’d seen and we dropped all thoughts of autism. We requested intervention from the school SendCo – it was by this time her final year at primary and her class teacher firmly believed her attitude was the only problem. The SendCo never observed, never assessed.

Our daughter chose a secondary school where few of her friends were going – she wanted a new start. The first year was wonderful: top classes, after school clubs, positions of responsibility. In Year 8 a number of things happened. Puberty hit and her body began changing in ways she was uncomfortable with, GCSE options had to be made and teachers were constantly pushing for ‘future plans’ to be made, peers were starting to form relationships, to talk about who they wanted to go to the Year 11 prom with and who they wanted to marry. At the same time, her brother fell ill with ME/CFS and so she lost her closest playmate and, as we now realise, social support.

The lack of sleep began to catch up – she had only ever managed 6-7 hours a night, although now older she would rest quietly and not disturb us. We contacted the school regularly with niggles – she’s exhausted today, she has a migraine today, she doesn’t understand what the teacher said, another child has been teasing her, and so on. The GP advised us to stick to waking her at 7am – on no account to ‘give in’, as this stage is just normal teenage stuff. By Year 9, grades had plummeted and after school activities diminished. Following a viral infection that seemed to be the straw that broke her, she was attending school only in the afternoons and we were receiving letters threatening court action. We asked repeatedly for a referral to the ASD team locally – the GP argued it was the school’s responsibility, they argued it should be the GP. We spoke to organisation after organisation, trying to join the dots.

We concluded she has high functioning autism, she has learnt to cover this, but has become utterly exhausted and unable to function fully. The school made the referral. Weeks later we have received a letter advising us it doesn’t give enough information to earn an assessment and we have now submitted our own evidence. We are told the wait, if granted an assessment, will be over a year – by which time she will be over 16 and will have left school, and will have to be re-referred to an adult team. In the meantime, the school are trying – but staff still ask her ‘when do you think you’ll be better?’ and her Autism Champion mentor forgets to turn up for appointments. The belief is that she is coping well – staff don’t see the fall out, or appreciate that her ‘good’ behaviour is just trying to fit in, and carries huge cost.

Interestingly, I recently bumped into some staff members from her primary school. I told them we were waiting for an ASD assessment. No one was surprised and all nodded and said it had always been pretty obvious. The huge question then is, why, oh why didn’t anyone mention it? The answer I suspect is that she was achieving educationally and behaving well, neither she nor I were making a nuisance of ourselves.

The current system encourages our children to make themselves ill, to fall seriously behind at school, to lose friendships, to take themselves to the brink before anyone helps. We have supported and protected our daughter, but in doing so we have continued the charade – allowed her to pretend at school and fall apart, unseen, at home”.

If this has struck a chord with you, we’d love to hear your story. Please get in touch with sarahj@cerebra.org.uk.

Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.

News – November 2015

A stack of newspapersOur monthly roundup of news and legislation relevant to families who have children with neurological conditions.

Ambitious Colleges
Ambitious About Autism plan to open two more college facilities for young people with autism, from Summer 2016 in Tottenham and from September 2017 in Isleworth, London. (Ambitious College).

Epilepsy Passport
A downloadable template Epilepsy Passport has been developed by the Royal College of Paediatrics and Child Health. This is a record that families can use for emergency healthcare visits and other situations.

Autism Diagnosis Crisis
The National Autistic Society invites people to join their campaign for earlier diagnosis of autism.

Victims of Crime
A new Code of Practice for Victims of Crime has been published.  It includes various provisions for victims with disabilities, (Ministry of Justice.  Applies to England and Wales).

New NICE guidance: 
Quality standards on Challenging behaviour in learning disabilities; and Bipolar disorder, psychosis and schizophrenia in children and young people, (National Institute of Health and Care Excellence).

Immunisations
A quick guide to immunisations for the parents of premature babies, (NHS). Updated to reflect this year’s changes to the schedule.

“Supporting the Attainment of Disadvantaged Pupils”
A new report by the Dept for Education describing what has worked in selected schools around the country.

Legislation

2015 asp 11, British Sign Language (Scotland) Act 2015
Prepares for the preparation and publication of plans in relation to British Sign Language by certain national organisations.

2015 No. 1754, The Universal Credit and Miscellaneous Amendments Regulations 2015
From dates between November 2015 and April 2016, a number of adjustments to the rules for receiving Universal Credit.

2015 No. 1778 (C. 108), The Criminal Justice and Courts Act 2015 (Commencement No. 3 and Transitional Provisions) Order 2015
From 26 October, means that 17-year-olds who are interviewed or detained by police must now be treated as under-17s in some ways (such as forms of assistance, and care from the local authority).

2015 No. 1776, The National Health Service (Exemptions from Charges, Payments and Remission of Charges) (Amendment and Transitional Provision) Regulations 2015
Changes the rules for entitlement to reimbursement of NHS-related costs (optical, travel etc.). Families can still claim under the old rules for charges incurred up to 31 October 2015.

Consultation

Local area SEND consultation
About inspections of local areas’ effectiveness in identifying and meeting the needs of children and young people who are disabled and have special educational needs. There are separate versions for adults and children to respond to.
Closing date: 4 January 2016 (applies to England. Ofsted, with the Care Quality Commission).

Puberty and My Autism Diagnosis

Mair Elliott

Mair Elliott

Mair Elliott, now aged 18, shares her experience of being diagnosed with Autism as a teenager.

“Most of us will know the time, the time when we suddenly got really grumpy, our bodies started sprouting hair from random places, we started to spend a lot more time ‘hanging out’ with our friends. The time when everyone suddenly became obsessed with relationships and sex, and when everyone wanted to try the latest ‘must haves’. People started to wear different clothing and tried different styles . Our parents drove us up the wall, and school always set too much homework. You guessed it; the teenage years.

Many of us will remember those precious few years as being full of fun, experimenting, heartbreak, excitement and a little confusion. No one has smooth sailing through puberty, all of us were desperate to ‘find ourselves’. Most will find their paths, and learn to sail the rough seas of growing up. But what happens when your whole world is turned upside down by a few simple words, slap bang in the middle of those unstable years?

I was 14 when something started going wrong, I didn’t have a clue what it was. Low moods, an inability to concentrate, lack of interest in things. I brushed it off as ‘teenage angst’ after all that’s what’s supposed to happen isn’t it? But over a couple of months things got worse and I felt low all of the time, I wasn’t sad, I wasn’t anything really, just empty. And then the worrying and stressing kicked in. The fear and nervous energy began to sing its song in my head. I would be reduced to a quivering ball of tears and breathlessness, something which I now know as a panic attack. I had no control over what my head was doing, but it was certainly not doing as it was supposed to. I started hurting myself, not something which came as a decision but more as an instinct when I couldn’t deal with how I felt. I could no longer face eating, and slowly restricted what I put in my mouth, which again was not a conscious decision, it wasn’t something I had control over.

Luckily, a teacher in school had noticed, she referred me to school nurse, who promptly referred me to mental health services. I met with a psychiatrist, something which could be a blog post in itself! I was never good at speaking about how I felt, because I never actually was able to understand how I felt. But after a couple of sessions the psychiatrist said something which would change my life forever.

“I think you might be on the Autism spectrum.”

I was given a diagnosis of Autism at 15 years old, I was also diagnosed with Depression and Anxiety, just to complete the set.

I had always known I was different, but at a young age I took matters into my own hands and decided to learn how to be ‘normal’. I would watch other children and copy what they did, mimic their body language and facial expressions, and I learn what words they used. And this became my obsession, people were my obsession. So no, it probably wasn’t noticeable that I had autism to the untrained eye. All the stereotypical things that people think of when it comes to autism, I just didn’t do. For example, I learned how to make eye contact, I hated it but I did it because that’s what everyone else did, my obsession was people, so I didn’t have any obviously unusual obsessions, I could speak and communicate well because I had taught myself how.

Being given a diagnosis during the years in which I was supposed to be figuring out who I was, blew everything into confusion. I started questioning the everyday things, whether or not they were ‘autistic’ things or just me. Questions like, ‘what does this mean for the future?’ And, ‘Am I going to be able to live a ‘normal’ life?’ started cropping up. My mental illness had declined to the point where I required hospitalisation. All the while I was desperate to work out who I was.

I quickly started to believe that I was destined to be the ‘crazy’ one. The ‘crazy cat lady’ or the ‘mad hatter’. Because all of these things, the mental illness, the autism discovery completely blew my world into pieces. And I was subjecting myself to stigma which the rest of the word was waving in my face. I thought that I would be ill, and unsuccessful because apparently that Is who I’d become during those years. Whilst my friends were out experimenting, trying new things, developing their personalities and becoming people, I was in and out of hospital, meeting with doctors and nurses, taking medication, having meltdowns in the school corridors and needing stitches every couple of days.

I am now 18, I am a lot better, and doing well. I believe that I have managed to reach the other side of the terrible teenage years. My path through was completely different to my peers, who have all recently embarked on their new journeys in University. But I think the most important thing I think that I have recently discovered, is that I don’t have to be the ‘crazy’ one, I can be who I want to be. I have autism, and that’s ok. I have depression, and that’s ok. I have anxiety, and that’s ok. In the past I have thought that those things will define me for the rest of my life, that I would always be known by my autistic traits. But now I know that although those things are part of me, they cannot and will not define who I am as a person. They do not have that kind of power over me, and I won’t ever give them that kind of power ever again. I can search for who I am , and I can become something which does not allow my diagnoses to set any limits on my abilities. And of course Autism comes with its advantages, for example once I find something I like I have the drive and willpower of a police dog on the scent of explosives to pursue that topic of interest. I can see the world in a completely different way to most other people, and I think my view of the world is a beautiful one.”

Mair gave us full permission to publish this article which originally appeared as guest blog on the website aspertypical 

Is the diagnosis of a genetic disorder important for children with intellectual disability?

 

ASD in genetic syndromesDr. Dawn Adams, Dr. Kate Woodcock and Prof. Chris Oliver – Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham.

This briefing has been prepared to help parents and carers of children with intellectual disability consider if, or when, a genetic diagnosis can be helpful in understanding their child’s needs. It is based on an academic book chapter written by the research team at the University of Birmingham’s, Cerebra Centre for Neurodevelopmental Disorders that was published in 2010.

Download Is the diagnosis of a genetic disorder important for children with intellectual disability? PDF

 

1. Oliver, C., Woodcock., K. A. & Adams, D. (2010). The importance of aetiology of intellectual disability. Learning Disability A life Cycle Approach, Second Edition. Chapter 10, pages 135-146. McGraw Hill, Open University Press, Berkshire, UK.

First published 2012. This edition 2015.  Review date 2018.

Further information about FIND and their services can be found by following this link, please click.


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