A shocking survey of parents of over 900 students in the UK with children suffering from aspects of Autism Spectrum Condition (ASC) revealed that 61% of those asked said their child was being bullied because of their autism related condition. A more shocking statement was the fact that 73% of parents asked said schools either didn’t handle the situation at all or handled it poorly when it comes to bullying Autistic Children.
93 % of those parents said that their children’s progress at school had been affected by ongoing bullying…. And a whopping 89% said their children were borderline terrified of the aspect of spending time with their schoolmates outside of school hours.
The recent numbers show there are about 500,000 children diagnosed with ASC with numbers expected to rise in the coming decade.
The same survey revealed that having a child with ASC or a special needs child in general puts a huge strain on the family and on relationships and marriages in particular. 65% of respondents said having a child with ASC put a great pressure on the marriage and 74% said it put negative pressure on all family members including siblings.
The study was sponsored by ASC Campaigner Anna Kennedy. AnnaKennedyonline autism charity started the campaign to help ASC children back in 1999 by building her own school “Hillingdon Manor” for children diagnosed with ASC and Asperger syndrome. The reason being that she has two children, one with ASC and one with Asperger syndrome and she was denied by 26 special needs schools all over the UK so Anna took matters into her own hands and decided to provide quality education and support for children with ASC and Asperger syndrome.
“I felt that a survey was needed to truly assess the extent of the problem due to the overwhelming amount of emails and messages we receive as a Charity and through Social Media from families who are affected by this issue at grass-roots level every day; it became apparent that they needed a platform through which to voice their direct concerns. The Survey was the perfect opportunity to raise the profile of the problem and alert schools to take action on what is evidently an extremely serious issue”
Anna Kennedy OBE
Advice for parents : https://www.bullying.co.uk/advice-for-parents/advice-if-your-disabled-child-is-bullied/
Anna Kennedy OBE and Arshya Vahbzadeh have been comparing their findings after speaking to parents about autism diagnosis. Anna shared her results of the charity survey across the UK and Arshya speaking about his findings in the US on autism diagnosis.
Arshya stated that parents of children with autism have many obstacles to getting their child the resources and support that they need. I was therefore concerned to hear about the increasing number of people who are reporting that their children are losing their autism diagnosis.
Why is this happening? Did their autism resolve? Did the parents ask for a second opinion?
In many of these cases the answer to all of these questions is a resounding “no” — the children didn’t change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being “undiagnosed” after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don’t know about. This caveat can help protect families from being forced to undergo a “reassessment” on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger’s, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn’t mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that “undiagnosing” these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to “undiagnose” a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to “clean up” the science; in the meantime, it’s my duty to advocate for my patients.
Arshya Vahabzadeh, M.D.
Harvard Child Psychiatrist, British certified Family Physician.
Follow Arshya Vahabzadeh, M.D. on Twitter: www.twitter.com/@vahabzadehMD
Anna Kennedy Online, UK – recently produced the survey Autism Diagnosis Survey in the UK, on Dec 14 Autism Daily Newscast reported on the findings.
Anna Kennedy Online found that when conducting research into how children on the Autistic spectrum were being diagnosed and what diagnostic tools were being used to do so, there was no consistency within the National Autistic Society (NHS). It was found that both the diagnostic tools, ICD-10 and DSM-V were being used by health professionals.
Both Austin Hughes who is the training and advice officer and Anna Kennedy spent many weeks researching and writing to different departments within the NHS regarding the use of the Autism Diagnosis Tool. This is the question that Anna asked:
“Are the NHS stating we are using the ICD-10 as a diagnostic tool? If so does that mean that everyone giving a diagnosis within the NHS are required to use It.?”
Anna told us that every department that they contacted, even at the very top, either gave a different answer or a reply of ‘I do not know’.
Talking exclusively to Autism Daily Newscast Anna shared with us a few of the answers given to her regarding the diagnostic tool and process that she received via email.
Anna received a response from the Office of the National Clinical Director for Learning Disabilities, Dominic Slowie, who explained that:
“ICD-10 does determine how clinicians diagnose or treat problems. It is the internationally agreed classification used for statistical analyses of healthcare activity. Usually it is applied by coders to clinical records.”
The following was received from the National Institute of Health and Care Excellence (NICE):
“Thank you for contacting the National Institute of Health and Care Excellence (NICE) regarding ICD-10. We do not make any specific recommendations on using the ICD-10 as a diagnostic tool however; it is referred to in numerous guidance we have produced such as Autism diagnosis in children and young people or Attention deficit hyperactivity disorder. It would be a local Trust decision whether to use the ICD 10 as a diagnostic tool. I am sorry I cannot offer you any further information.”
From these findings Anna Kennedy Online believes that ‘the action of diagnosing ‘Autism’ is lacking any direction’. That professionals are trying to define and classify Autism which is not possible due to its very nature of it being a spectrum condition.
“We now have too many cases of people not receiving a diagnosis or having to wait for years of medical in-fighting around them to gain one.”
From the survey’s findings and subsequent research Anna Kennedy Online state that professionals are confused as to what diagnostic tool to use. They believe that the whole diagnostic system is not clear. They state that the NHS recognise and should use the ICD-10 diagnostic tool but that professionals within the NHS ‘state they diagnose to what the DSM-V states and often misunderstanding what is within it.’
Anna Kennedy Online goes on to say that they now have evidence of families whose children have Asperger’s Syndrome being told that they would have been given a diagnosis before but now under the DSM-V diagnostic criteria Asperger’s’ no longer exists.
Anna Kennedy’s final words are:
“Bottom line is that Austin, my husband Sean and I have discovered that every Local Authority is allowed to do what they want and pick and choose which tool they use as in Health Professionals very worrying! Different rules for which area you live in.”
The Autism Diagnosis Survey in the UK survey results can be found here
December 17, 2013 by Jo Worgan
For those of you wondering why all of your Facebook friends have suddenly turned into cartoon avatars, Bitstrips is a mobile and Facebook app that allows you to design cartoon version of yourself and create comic strips featuring you and your friends. Bitstrips has over 10 million downloads worldwide and recently became the No. 1 free app in the App Store and in Google Play. We also can’t help but feel proud as Jacob Blackstock, CEO and Co-Founder of Bitstrips, is Dr. Edward Blackstock’s son.
Besides being a fun app to update your Facebook status with, Bitstrips has proven to be an effective teaching tool. In fact, Bitstrips for School is licensed by the Ontario Ministry of Education as an educational tool for all public schools in the province. Bitstrips is also a wonderful tool for children with Autism, Asperger’s syndrome, and certain Learning Disabilities.
Jo Redman Patron of AnnaKennedyOnline has created wonderful collection of Bitstrips comics that explains how Autism/Asperger’s syndrome affects individuals. The comics were created by Jo Redman for Anna Kennedy Online – a charity that supports people with Autism and Asperger’s syndrome. Jo Redman is a World Kickboxing champion and is autistic herself. The original album of comics can be found on her Facebook page.
Comic Strip Conversations for Autism
Carol Gray (1994) created the concept of comic strip conversations for individuals with autism to develop a better understanding of social situations. Comic strip conversations are simple visual representations of various elements that take place during a normal conversation. One of the difficulties that individuals with autism have is the ability to understand ‘abstract’ concepts of social interaction, such as feelings and emotions communicated through body language and facial expressions. Comic strip conversations therefore help make these abstract concepts more concrete and easier to understand. Hallenbeck (1976) further supports that comic strips are useful in helping students with learning disabilities understand humour, learn to read, and decipher fact from fiction.
Bitstrips can help children with autism express themselves through comic strip conversations in a fun and interactive way. It can help them develop awareness of basic emotions by assigning facial expressions to the action presented in the comic, and use text elements to show what people are thinking, feeling and saying in a particular situation or conversation. For students with dyslexia, the comic strip panel structure of Bitstrips can help support the left-to-right flow in reading. Bitstrips can also help students who may be having emotional or behavioural problems express themselves.
Gray, C. A. (1994). Comic strip conversations: Illustrated interactions that teach conversation skills to students with autism and related disorders. Texas: Future Horizons.
Hallenbeck, P. N. (1976). Remediating with comic strips. Journal of Learning Disabilities, 9(1), 11-15.
Please click on link to see Jo’s Bitstrip Comic. https://www.vbpsychology.com/bitstrips-comics-for-autism-aspergers/
Wandering in autism is common and often dangerous
Almost half of children with autism may wander
Children with autism
and their families face many challenges, and one of the most difficult day to day challenges for families is how to prevent their child from wandering. Unfortunately, it is all too common to hear about the tragic outcomes of children with autism who go missing.Research has shown that wandering and elopement in children with autism can affect almost half of 4 year olds, a rate at least four times greater than their non-autistic peers. In half of these wandering children, their disappearance was prolonged enough to result in significant concern among their caregivers.
These children have been noted to be more likely to elope from houses, and to a lesser extent from shops and schools. In the majority of cases near misses have been reported with automobile traffic. Additionally a quarter of these missing children were noted to have been at risk of drowning.
Over half of parents
report wandering or eloping behavior as being the most stressful situation they have to deal with, and shockingly 50% report no help or guidance on how to cope. Here are some practical tips to help:
1. Make people aware of the behavior – try to make neighbors, family members, and people who often interact with your child aware of the risk of elopement. Ask them to stop the child if they find them without an adult. You can place an ID bracelet or other identification marker on the child or their clothing. Some parents have even had to resort to using a GPS tracker or an app on the child’s phone.
2. Look closely at your home and garden. Since the majority of children wander and elope from homes, it is useful to pay close attention to their environment. Make sure that doors can be safely locked, and are not easily opened if the child is at risk of eloping. Buying more safety latches and locks is usually an option. Making sure that gardens have suitable surrounding fencing, and windows can be locked, are also useful considerations. Since many families have reported close calls in regards to drowning incidents, home pools should be emptied or suitably fenced off.
3. Teach your child about what to do if they get lost. Some parents have tried to teach their child how to answer specific questions in case they become lost. Key questions that children may be taught to answer may include their name, address, or parent’s telephone number. Often parents will practice this many times with their child, although the ability to do this varies as each child is unique.
4. Help your child obtain good sleep. Much easier said than done, but often children may wander when their parents are asleep. We know from experience that children with autismmay have disturbed sleep patterns. Avoiding caffeinated drinks, and trying to set regular sleep patterns may help. Some parents have also used over the counter melatonin to help their child get some rest at night. If sleep continues to be a problem please consult your physician or sleep specialist
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 comorbidities 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. These findings support an association between autism and the immune system.
The second point to consider is that people with autism may have elevated levels of inflammatory immune chemicals called cytokines in both their brain and spinal fluid. Research has shown that these inflammatory cytokines are also increased in other areas of the body, such as the GI system and the blood. 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.”
For more by Arshya Vahabzadeh, click here.
For more on autism, click here.