Battling myths on life with autism

But tens of thousands of families are living with it in some form or another and it impacts on every part of their life.

Autism comes in many forms and parents often have to battle to get a diagnosis that can ensure that their child gets the required specialist help.

According to the Pentagon, the Russian president has "an autistic disorder that affects all of his decisions".

Brenda Connors, an expert in movement pattern analysis at the US Naval War College in Newport, wrote: "The Russian President carries a neurological abnormality."

He said Putin's "neurological development was interrupted in infancy," after studying him in videos, and that his authoritarian obsession with "extreme control" is a way of overcompensating for his condition.

The report cites Dr. Stephen Porges as concluding that "Putin carries a form of autism".

It is the kind of report that is unhelpful for who are trying to help families cope with the condition.

Jane Harris, Director of External Affairs and Social Change at the UK's National Autistic Society said she is frustrated at the headlines it creates.

She said: "This kind of speculative diagnosis is fraught with risks and is unhelpful.

"Autism is a complex condition and a diagnosis should only ever be made following a thorough, holistic face-to-face process involving both the individual and the diagnostician.

"According to accounts in the media, the study authors themselves backed off from confirming their diagnosis because 'they were not able to perform a brain scan on the Russian president'.

"We are not aware of any definitive diagnostic tool that involves a brain scan.

"This study is driven by the wilder reaches of military intelligence and will seem laughable to parents in the UK facing the real and present challenge of getting a proper diagnosis for their child."

Knowledge about autism is still in its infancy and research continues into it and its causes.

One recent piece of research suggests frequent eye movements in babies could be a clue to whether they will develop an autism spectrum disorder.

The Medical Research Council study measured 100 six-month-old babies looking at a static image. Those later diagnosed with ASD moved their eyes around more often, which could be a cause of learning problems.

The National Autistic Society says local councils "continually underestimate" the impact of autism.

And government figures show there was a 33 per cent rise in the number of autism-related appeals lodged at the special educational needs and disability tribunal in 2013/2014, compared with the previous school year.

One Shropshire mother has set up a help page for parents who have children with autism in order to raise awareness of the condition.

She says there is much confusion about the condition and the way it can affect young children and that when a diagnosis is given it can come as an unexpected shock.

At the age of two Heidi Collier's son Brandon, who is now 11, was diagnosed with autism after months of tests and appointments.

Miss Collier, of Berwick Avenue, Shrewsbury, said there were limited sources of information about the condition and she was left scrambling around for ways she could help.

The mother, who also has children Harlow, two, and Cooper, eight, said: "Before Brandon was diagnosed with autism I did not know anything about it. He started to do funny things with his hands and was slow learning to talk. I took him to the doctors and after a few months we had the diagnosis.

"It came as a bit of a shock. The hospital gave me some numbers to get some more information, but I did most of it on my own.

"There is nothing on the internet for parents who have personal stories of going through living with someone with autism so I started writing poems.

"People sometimes ask me what autism actually is and I still find it difficult to explain and I think if they can read actual experiences they can begin to have an idea of what it is like for Brandon and for us.

"I wanted to raise awareness of autism and let people know all about Brandon and his needs and fears so that they are more aware if they meet him. There are some very understanding people out there and I hope my page helps in many ways."

• See Heidi Collier's Facebook group 'Autism, through a mother's eye'

Experts talk about the autism spectrum, which refers to the characteristics of the condition and the extent to which it affects the sufferer. Many people will recognise some of the symptoms in themselves, particularly that of being anxious in new surroundings and the need for stability and routine.

They'd have been punished for being too loud, too quiet, too intelligent or too honest. They'd have been punished, in short, just for being themselves.

Thankfully, today's society has a greater understanding of a condition that affects huge numbers of people. Our systems are far from perfect, however, and there are too many gaps in our knowledge and in society's framework for supporting autistic people.

Heidi Collier is a woman who is plugging some of those gaps. She cares deeply for the welfare of her own son, who is autistic, and is determined that he should lead as normal a life as possible.

She is equally committed to providing him with the sort of equality that every person deserves.

In recent times, we have made great strides in terms of gender equality and the avoidance of prejudices based on disability, sexuality and other points of perceived difference. It is time for us to move away from out-dated modes of understanding for people on the autistic spectrum.

Miss Collier said Brandon gets anxious in busy places and has set routines and rituals.

She said she has written a number of poems about her experiences and posted them on the Facebook page she has set up.

The page was set up last week and it has already had over 3,000 likes.

"I have had messages from parents in Australia, America and all over the world saying how helpful the page is," she added.

"I have also had comments from people that don't have children with autism saying they have been really moved by reading them, which is great as it shows it is helping people understand.

"I want it to help other families who are maybe at the beginning of the diagnosis process and help them know that they are not alone in their thoughts and feelings.

"I have been really honest in all my poems and they are emotional to write as I am actually living them but that is what makes them so powerful as they are true life. I think it's so much easier for others to relate when they read experiences rather than just facts on a website. I am letting people into what life is like for me and also the other members of my family as well."

Recently the National Autistic Society urged politicians to improve support for people with autism.

A spokeswoman for the society said: "Addressing the lack of awareness and understanding of autism across health and care services is needed.

"The Department of Health committed to making this happen five years ago, but progress has been slow. Without this understanding professionals such as GPs and assessors for social care are unable to identify needs properly and refer people with autism on for appropriate help and support.

"Also action is needed to ensure that people with suspected autism can access diagnosis in a timely way and can access post-diagnostic support."

More parents of children with autism in England are taking legal action against their local authority, because they do not think their needs are being met.

Parents of children with all types of special needs lodged a total of 4,069 appeals to the tribunal system in England in the school year 2013/14, up from 3,602 the year before, an increase of 13 per cent. Of these, 1,633 were autism-related – up from 1,231 in 2012/13.

The Department for Education says councils must ensure all children, including those with autism, are educated in a place which meets their needs.

A DfE spokesman: "These findings are prior to when our far-reaching reforms in the Children and Families Act came into force.

"The new law is designed to radically improve support for young people – and over time we expect this to reduce the number of complaints."

About autism:

• Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.

• It is a spectrum condition, which means that while all people with autism share certain difficulties, their condition will affect hem in different ways.

• Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.

• People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

• For more information, contact the National Autistic Society at www.autism.org.uk or call the charity on 0808 800 4104.