A conference designed for parents, professionals, carers and families who want to in-crease their knowledge and skills on behalf of children and young people affected by an autism spectrum condition
Registration with tea/coffee
Welcome and introduction Anna Kennedy OBE, Director, Hillcrest Autism Services
Behavioural Issues and Challenging behaviour.
Austin is the Behavioural Support and Training officer for Anna Kennedy Online. He draws not only on his previous training within the NAS but also his hands on experience at many levels throughout the Autism community.
11.15amChief Superintendent Simon Humphreys
Simon is currently a Chief Superintendent with North Wales Police and has a son Joshua who is on the Autistic Spectrum. He will share his experiences both as a senior police officer and father to offer a view and hopefully useful pointers to help make children and young people with ASD safer.
Jan speaks about her son Luke who was diagnosed at 10 years old with Autism and since then has faced many chal-lenges head on. Interestingly, one of those challenges he has placed before himself such as his 5 day trek across the Arctic for a BBC Documentary.
My Life with Autism, how it affects me, my strategies and sensory needs.
In 1943, a child psychiatrist, Leo Kanner M.D., first described autism. Since then, the “blame” for autistic children that had originally been erroneously placed on parents, particularly mothers, has largely disappeared. But before it did, and with the approval of some experts, mothers of children with autism were accused of being too detached, emotionally cold, leading to the “refrigerator mother theory.” You can imagine the awful distress and turmoil this created for mothers, and families, already facing enormous challenges in raising a child with autism.
Research was instrumental in dismissing maternal blame theories. What emerged was a focus on the study of the brain of youth and adults with autism. Genetic tests, brain scans, and clinical medication trials continue to reveal how the autistic brain is different. Autism has entered the mainstream of brain research, like the conditions that often accompany it, such as epilepsy, sleep disorders, movement problems, and many psychiatric disorders.
But does autism start, or stop, at the brain?
However, what if autism isn’t a “primary” brain problem? What if the brain is just one of many body organs that are affected by a wider-reaching “whole body disorder”? We know, for example, that there are a variety of other medical conditions connected with autism. Let’s start with the gastrointestinal (GI) system.
A recent CDC study involving over 35,000 children found that an autism diagnosis was associated with a seven times greater risk of frequent diarrhea or episodes of colitis during the previous year. A number of research groups are exploring abnormal changes in the GI system of people with autism, including the nerves that supply the bowel and other intestinal organs, and also the permeability of the intestinal wall (sometimes called the “leaky gut”).
This particular CDC study also highlighted a 60 percent greater chance of asthma as well as respiratory or skin allergies in those with autism. While these findings are important, we continue to have too few studies examining the association between autism and other medical conditions. Family members of children with autism will tell you that research is only now highlighting medical commodities that they have pointed out for decades. In my work as a resident in child psychiatry, I have seen that constipation, diarrhea, colitis, and food intolerances are not only common in autism, but are often difficult to treat.
There is a dearth of physicians who are experienced in treating people with autism, a factor that only heightens the challenges in treating these complex medical problems. I believe that this has led many parents to turn to alternative treatments, including gluten-free or casein-free diets, with some firmly believing they have witnessed marked improvements.
What could be contributing to then heavy medical burden in autism?
Over the years there has been an avalanche of theories about the cause(s) of autism. Recently, there is evidence that some children with autism may have a malfunctioning immune system. Let’s consider that view. Firstly, in family members of people with autism, we know that there are higher rates of a range of immune related conditions, including autoimmune thyroiditis, rheumatoid arthritis, celiac disease, ulcerative colitis, psoriasis, and Type 1 diabetes mellitus. Specific immune antibodies in a pregnant mother’s blood are thought to be responsible for some cases of autism in their children.
One study indicated that children with autism and GI problems may have overactive immune cells and inflammation of their intestinal linings, even when compared to children without autism who have inflammatory bowel diseases. Thirdly, some people with autism appear to have antibodies that target their own brain tissue, a finding reported by several research studies.
Furthermore, increased antibodies to gluten have been found in groups of children with autism, a mechanism that might explain some of the intestinal complaints seen in these patients. Other research has shown that there may be impaired functioning of the intestinal wall in autism (the “leaky gut” wall), and also alterations in the working of the nervous system connecting the GI system to the brain, especially involving the neurotransmitter serotonin.
What does all of this mean?
Let me be clear: There is an immense amount that we do not know about autism. Autism may have a thousand different causes and be a combination of many genetic and environmental factors (see my previous piece). It does appear, however, that there is growing evidence linking autism, an abnormally functioning immune system, and a variety of medical conditions.
The exact associations, so far, elude our understanding. But if there is one promising place to shine the flashlight of research it is on the immune system as a factor in autism with medical complications. Imagine the relief ahead if we can not only understand the mechanisms by which autism is linked to medical illnesses but also find ways to prevent and treat them?
Whether or not autism is a “whole body disorder,” the high medical burden must prompt us to develop comprehensive services, combining psychiatry with other medical interventions, done by general practitioners as well as specialist physicians and therapists. By producing more integrated autism services, we may one day be able to deliver “whole body health care” for “whole body conditions.”
Follow Arshya Vahabzadeh, M.D. on Twitter:www.twitter.com/@vahabzadehMD
The way in which autism develops in older age are not fully understood
A charity has warned of an “invisible generation” of older people with autism in Scotland whose condition is often misunderstood and misdiagnosed.
The National Autistic Society (NAS) Scotland said there was still a tendency to only associate the condition with children.
But one in five people with autism is thought to be over the age of 60.
The charity called for action to ensure the needs of elderly people with autism were fully understood and met.
It urged the Scottish government to act on its concerns as it implements its Autism Strategy for Scotland and rolls out £13.4m in funding to support people with the condition.
NAS Scotland said that, of an estimated 58,000 people with autism in Scotland, more than 11,600 are thought to be over 60.
Autism is said to be under-diagnosed in older people, and NAS Scotland has expressed concerns regarding the diagnostic pathways Scottish health boards have in place.
The charity’s recent survey of adults with autism revealed that more than a third have waited three years or more to access a diagnosis.
Question marks also exist over the form effective support will take in the long term for those with autism, as there is little research into how the condition develops in older age, NAS Scotland warned.
Too many older adults with autism are missing out on diagnosis entirely and too many are still waiting for their needs to be assessed”
Robert MacBeanNAS Scotland
And it said it had received anecdotal evidence that clinicians working in age-related specialisms often have a poor understanding of the disability and limited professional understanding on how health issues such as dementia may affect adults with autism.
Robert MacBean, policy and campaigns officer for NAS Scotland, said: “Huge strides have been taken in changing attitudes towards autism and increasing understanding of the lifelong, disabling condition that touches the lives of over 58,000 people in Scotland.
“But there is still a tendency to think of autism as a condition that just affects children, when there are older people with autism in all our communities who need our support and care.
“Too many older adults with autism are missing out on diagnosis entirely and too many are still waiting for their needs to be assessed. And all too often, it’s unclear what support will be available for them as they get older. This must change.”
He added: “The Scottish government has a chance to finally deliver these adults the support they need by making sure that their views, experience and advice are taken into as it implements its Autism Strategy for Scotland.
“It is essential decision-makers at all levels don’t miss this vital opportunity to make a difference to thousands of lives.”
Older people with the condition are due to meet the SNP MSP for Aberdeen Donside, Mark McDonald, at the Scottish Parliament on Tuesday to discuss their concerns.
The diagnosis finally explained my life, who I am and took away a lot of the negative feelings I’d projected onto myself”
Mr McDonald said: “This will be a very important roundtable event which will bring together a combination of decision makers and service users to learn about the experiences for older autistic people.
“Too often autism is incorrectly viewed as relating to children and young people only, and this can often lead autistic adults feeling that services are not directed to their needs.
“I hope that this will give an opportunity for these issues to be raised with the people who take decisions and advise government on the way in which the autism strategy can be delivered in a way which captures all people with autism.”
Retired joiner David Silvester, 67, from Moray, was diagnosed with Asperger syndrome – a form of autism – two years ago.
His condition had been misdiagnosed as bipolar disorder and schizophrenia since he was in his late 20s.
He said: “My diagnosis came as a huge relief. For most of my adult life I’d asked ‘what’s wrong with me?’ The diagnosis finally explained my life, who I am and took away a lot of the negative feelings I’d projected onto myself.
“When I was very young, research into Asperger syndrome was also in its infancy. But I’d known from an early age that I was ‘different’.
“If the adults around me had known what to look for, they would have seen classic Asperger’s traits. On the outside I appeared articulate and functioning well. But inside I was struggling.”
He added: “After my diagnosis, I thought a world of support services in Moray would open up to me. It was a big disappointment to discover this wasn’t the case.”
Moray Council is now developing its Autism Strategy, and Mr Silvester is involved in educating people about autism and encouraging decision-makers to put in place effective support.
Mr Silvester added: “It would be great if the public could see that older people with autism are not ‘weird’ or ‘odd’. We just see the world in a different way. We need the right support at the right time, but we also have skills, talents and abilities.”
Another teenage life has been lost due to cyber bullying. Hannah Smith, 14, from Lutterworth, Leicestershire was found hanged in her home on Friday 2nd August 2013 after having received abusive messages, such as ‘drink bleach’ and ‘go die’ on popular social media site Ask.fm. Hannah, who was a member of the Latvia-based website, was found in her bedroom by her 16 year old sister after being subjected to cruel taunts through the social media site.
David Smith, father of Hannah recently asked “How many more teenagers will kill themselves because of online abuse before something is done? These sick people are just able to go online and hide behind a mask of anonymity while they abuse vulnerable teenagers.” (Mirror)
Tragically, Hannah is not the only teenager to have taken her own life due to cyber bullying. Irish youngster Ciara Pugsley killed herself in September last year due to cyber bullying on Ask.fm, after reports of months of spiteful messages and online bullying. (Mirror)
Research has found that over half of adolescents and teens have been bullied online and more than 1 in 3 young people have experienced cyber threats online. (bullyingstats.org)
With the rise of the use of mobile phones and people having near constant access to social media sites, more children and teenagers are becoming affected by a form of cyber bullying. ‘Over 80% of teens use a cell phone regularly, making it the most popular form of technology and a common medium for cyber bullying.’ (bullyingstats.org)
Research shows that ‘About 58% of kids admit someone has said mean or hurtful things to them online, and more than 4 out of 10 say it has happened more than once.’ (dosomething.org)
The issue of cyber bullying has increased over the years as the use of social media is becoming an increasingly popular way for children and teenagers to communicate and interact with their friends. Not only that, it is used to seek advice on problems or concerns they are too shy to talk to their families about. This of course exposes them at their weakest, and hurtful or outright abusive message can be deeply affecting.
As social media is going to continue growing, it is important for families to try and prevent their children from being affected by the issues of cyber bullying. While there is currently pressure on the sites themselves to try to “police” what goes on, it is also clearly important for certain steps to be taken by people closer to home.
What can we do?
Parents can’t be there to watch what their children are doing on a constant basis; however, they can be there to educate them on what they should and shouldn’t do when using social media websites. Examples of this are taken from the National crime prevention council:
• Never give out personal information online, whether in instant message profiles, chat rooms, blogs, or personal websites.
• If someone sends a mean or threatening message, don’t respond. Save it or print it out and show it to an adult.
• Don’t put anything online that you wouldn’t want your classmates to see, even in email.
• Don’t send messages when you’re angry. Before clicking “send,” ask yourself how you would feel if received the message.
• Help kids who are bullied online by not joining in and showing bullying messages to an adult.
These are simple ways for parents to begin to protect children from cyber bullying, but, as well as educating children, it’s important as adults to perhaps review the situation at home, in order to keep closer eye on children’s online activity.
Advice for parents:
• Keep your home computer in a busy area of your house.
• Help children set up email and chat accounts. Make sure that you know their screen names and passwords and that they don’t include any personal information in their online profiles.
• Regularly go over their instant messenger “buddy list” or social media “friends” with them. Ask who each person is and how they know them.
• Discuss cyber bullying and ask if they have ever experienced it or seen it happen to some-one. Try to keep that channel of communication open so that if an issue does arise, they feel comfortable sharing their problems with you.
• Explain that it is not your child’s fault if they are cyber bullied. Emphasize that you won’t take away their computer privileges – this is the main reason children don’t tell adults when they are cyber bullied. (National crime prevention council)
What is the law against cyber bullying?
In June 2013, the Director of Public Prosecutions set out guidelines for CPS prosecutors to consider when approaching offences of this nature, David Cook, Cybercrime expert was invited to the meet with the DPP in order to draft these guidelines, and make further submissions to the DPP as part of the public consultation. In relation to this issue, he notes that, “There are no specific social media offences. The guidelines discuss four distinct offences that may arise:
1. Communications which may constitute credible threats of violence to the person or damage to property.
2. Communications which specifically target an individual or individuals and which may constitute harassment or stalking within the meaning of the Protection from Harassment Act 1997.
3. Communications which may amount to a breach of a court order.
4. Communications which may be considered grossly offensive, indecent, obscene or false.
It is difficult to see how cyber bullying would fit into that and, for that reason, I wonder whether the Government needs to re-consider the current legislation. It is certainly clear that the internet community naturally includes many vulnerable groups – including children and those with disabilities and who may interpret such messages in ways that others may not – which deserve to be protected.”
For now, parents are certainly advised to take an interest in their children’s online activity and, if they believe that bullying is occurring, to try to find out more about what is going on and to take the necessary steps as appropriate thereafter.
– See more at: https://www.pannone.com/media-centre/blog/cybercrime-blog/what-will-it-take-protect-our-children-cyber-bullying#sthash.T7ebZfQR.dpuf