Autism Bill Ireland - Medical Care for Autism
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Mary, Brian and Adam Godley
Dear Minister Simon Harris, Minister Dr Katherine Zappone, Minister Finian McGrath and all other representatives of Dail Eireann and of the Seanad Committee,
I am writing a very urgent and important letter today which we believe every member of the Irish Dail and Seanad needs to read, be familiar with and take note of. My name is Mary Godley and I am a woman with a diagnosis of Asperger’s Syndrome who is also the mother of a child with an autism diagnosis i.e. Adam Godley, aged 9.
Today I am writing for myself and on my son’s behalf to express my shock, dismay and concern at the new proposed Autism Bill - Number 61 of 2017
Sponsored by Senator James Reilly
Bill entitled an Act to provide for the development and implementation of a cross-departmental multi-agency Autism Spectrum Disorder Strategy and to provide for related matters.
This Bill is hugely inadequate and in no way properly provides for the needs of children and adults on the autism spectrum. As its ideals and methods are insufficient to meet the needs of people with autism most particularly the huge medical needs that they most often have. I want to urgently inform all of you that the research from the past twenty years or so, strongly supports the medical needs of people on the autism spectrum which are most likely to be far in excess of what is being recommended as appropriate care in this inadequate Bill.
My deepest concerns lie with the fact that the Minister does not seem to have taken very much if any advice on scientifically validated research into the Health Care needs of people on the autism spectrum.
Content of Autism Spectrum Disorder Strategy
3. (1) The Autism Spectrum Disorder Strategy shall—
(a) outline how the needs of persons with autism spectrum disorder should be met
service providers in respect of—
(i) access to healthcare services
As above I do concede that ‘access to healthcare services,’ is mentioned in the Bill but then a list is supplied of who is considered to be relevant to meet the needs of a person with an autism diagnosis and I quickly realized that there is no provision whatsoever being made for all of the research, science and medical literature from the last twenty years or so, that all purports to the fact that people on the autism spectrum are much more susceptible than the general population to having a large number of co-morbid medical conditions that there is no provision made for at all in this act as it currently is.
(b) make provision for individual assessments of persons with autism spectrum
disorder to be conducted by a team of medical professionals comprising—
(i) a psychologist,
(ii) a psychiatrist,
(iii) a speech and language therapist,
(iv) an occupational therapist,
(v) a behavioural therapist, and
(vi) where indicated, a social worker
This list comprises of professionals who are only qualified to meet the psychological needs of a person with autism but makes no provision for their medical needs.
Here is a link to a very informative document that I highly suggest that everybody needs to read before voting on this Bill. As to deny these vulnerable children and adults further access to appropriate medical care due to ignorance and misinformation is a great injustice to a large number of vulnerable and sick children. It is hugely concerning that in 21st Century Ireland there is still so little information available to our elected representatives on the huge medical needs of this sector of Irish society. Also, unacceptable really that nobody seems concerned about the huge shortfall in health provision to people on the autism spectrum.
Here are some excerpts from this 28 Page Document that highlights and illustrates that people on the autism spectrum do not just require diagnosis and on-going support for their autism diagnosis but also for their co-morbid medical conditions which there is absolutely no provision made for in this act. Also the omission of such a vital aspect of the person on the autism spectrum condemns these vulnerable individuals to needless and completely avoidable pain, suffering and even death due to the lack of knowledge of the prevalence of these co-morbid medical conditions.
‘…Autism spectrum disorder (ASD) is a complex and highly heterogeneous neurodevelopmental condition. While ASD is currently diagnosed on the basis of the presence and severity of core abnormalities in social communication and repetitive behaviours, many common medical conditions are now known to be significantly more prevalent in people with ASD compared to the general population. Premature mortality is also significantly increased in ASD. Yet according to widespread reports and published case studies, there have been many cases of symptoms of medical conditions, sometimes severe, being attributed without investigation to ‘behaviours’, ‘mental health issues’ or just ASD itself..’
Minister Harris, Minister Zappone and Minister McGrath are all already aware of the medical neglect of my son Adam but to date have failed to offer any vital support to my son who has a number of medical conditions that we continue to struggle to get any appropriate medical care for here in Ireland. My son has severe gastrointestinal issues which most of the medical practitioners in Ireland say is not real and they brush off my sons pain and suffering and refuse to acknowledge it or treat it. There is now a huge amount of scientific studies that the health care providers in Ireland still seem unaware of. It remains a mystery why Ireland cannot move forward in helping this sector of Irish society as the rest of the world is doing but instead they continue to not recognize so much of the science and medical literature and nor will they endorse the recommended treatments within which would undoubtedly significantly enhance and improve the quality of life of these very vulnerable members of our society.
‘…While persons with ASD have higher rates of medical comorbidity and early mortality, as well as much higher health care utilisation and costs, they also consistently experience barriers in accessing appropriate medical care (Barrett et al., 2012; Gurney, 2006; Liptak et al.,2006; Tregnago, 2012). Combined with the behavioural manifestations of ASD and difficulties with communication, these medical conditions generate challenges to clinicians regarding recognising, assessing, and managing the illness (Olivie, 2012; Venkat et al., 2012). One study found that nearly a third of adults presenting with high functioning autism reported that they had not received appropriate medical care for physical health problems (Nicolaidis et al., 2013). It is feared that suboptimal medical care is even more likely for those severely affected by autism and less able to communicate with clinicians and carers...’
For me a member of the autism community it is both highly concerning and extremely disappointing that neither the Government, the Health Service, the Irish Medical Organization or even any Autism Advocacy Group have pointed out the medical needs of this vulnerable section of Irish Society. It is very shocking too that in this day and age that there is no provision made within this bill to ensure that the huge discrimination against these disabled people be addressed. I would ask the Minister to urgently please provide me with the research sources that were used to compile this Bill, as I fear they were very inadequate. Were any experts in the field of autism and co-morbid medical conditions even consulted? Or was there any medical survey done on the most up to date medical needs of people on the autism spectrum? Were families or individuals with autism consulted?
The Ministers mentioned will also know that I have already written to them on numerous occasions to express my shock and sheer upset at the current lack of medical care being afforded to my own son Adam. I have also specifically asked the Minister for Health can we not introduce legislation in Ireland that dispels with the huge discrimination that currently exists that denies my son and countless others access to appropriate medical care for severe gastrointestinal issues. The only explanation I can get for this neglect is that it is assumed my son cannot have any diseases of the Bowel simply because he also has an autism diagnosis. The Minister will also be aware that my son has had medical investigations carried out by a New York based paediatric gastroenterologist who diagnosed my son Adam, with many diseases of his small intestine. Yet to date, Adam is being denied appropriate medical care for these issues in Ireland because he also has an autism diagnosis. How can this medical neglect be endorsed in this country for children like my son?
Also, how can a Bill be currently be being debated by the Seanad and yet not one Political representative can see the elephant in the room? That people with autism in Ireland are being very unjustly discriminated against and are not being investigated for their medical complaints because it is wrongly assumed that all of their behavioural issues are as a result of their autism diagnosis. This is at this stage an antiquated view which science and medicine has long since moved on from, but unfortunately here in Ireland, no-one seems to want to move with the times, or let go of their very out-dated views and opinions. Instead they deny vulnerable children and adults medical care and leave them to suffer. Then they further vilify the stressed out and financially broken parents by attacking them in the Media and claiming they are turning to ‘quacks,’ to treat their children While all the while our hypocritical Ministers and Politicians want to do nothing about providing medical care for these children and instead they torment and attempt to criminalize parents who seek alternative therapies because main stream medicine is failing their children so miserably and so completely. This unfortunately is the day to day reality for thousands of Irish families while we have Taoiseach who says the Tuam Mother and Baby scandal was ‘a dark time in Ireland’s History, when children were not cherished as they should have been.’
I would like to inform you all that we most definitely still living in a time like that for those who are not aware of it. As every day in this country children like my son are left writhing in pain, day after day, bashing their heads continuously off any hard surface they can find as no-one will do anything about the pain they are in, also with terrible acidic diarrhea pouring out of them or chronic constipation, while our Politicians continue to go around with blinkers on them claiming that my sick child needs a Psychologist and or Psychiatrist and needs to be prescribed psychotropic medication, which will not even take his pain away. When what my son actually needs is a Gastroenterologist, an Endocrinologist, an Immunologist, A GP, a Paediatrician, a Geneticist, to name but a few.
‘…In a 2014 survey conducted by Treating Autism of families with ASD (n=304) only 22% of respondents reported that “the person with ASD had a thorough investigation of his/her symptoms from an NHS practitioner”. When asked what type of symptoms NHS professionals had dismissed as the result of ASD, answers included frequent vomiting, severe constipation, hyperactivity, diarrhoea, screaming, self-injury, sleeping only a few hours a night, seizure-like behaviours, aggressive outbursts, failure to grow contorting/posturing, excessive drinking of water, toewalking, chewing/eating non-food items, tics and jerks. Only 10% of respondents were “very satisfied” with their experience of NHS GPs and paediatricians,while 51% and 46% respectively were “unsatisfied”; 80% of respondents had sought private medical help for their children with ASD (Treating Autism survey,2014). In order to ensure that patients with ASD are not disenfranchised from the healthcare system it is of paramount importance that health professionals do not dismiss unusual symptoms and presentation of medical illness as being behavioural or ‘a part of autism’. Pain and physical problems in individuals with ASD—especially for approximately 40% of the population with severe communication difficulties or intellectual disability—frequently present in atypical ways and therefore are often erroneously dismissed as behavioural or mental health problems. In addition to reports by carers, published case studies provide examples of such ‘diagnostic overshadowing’ and illustrate how easily those unusual manifestations can be overlooked due to lack of awareness on the part of healthcare providers (Goldson and Bauman, 2007; Jones et al., 2008; Lea et al., 2012; Smith et al., 2012)…’
My own experience of trying to access appropriate medical care for my son is completely in line with the above paragraph. Doctors’ have asked us to leave their care due to I feel my continued insistence that they diagnose and treat my son accordingly in line with his displaying medical symptoms. Almost every doctor that I have seen to date in Ireland for my son Adam, has insisted that Adam is medically well and needs no medical interventions and that all his issues are due to his autism. However I now also have the opinions of a number of doctors and Health Care Professionals that that was not the case and that my son does in fact have a number of medical conditions that should have been investigated and treated at a much earlier stage. My son’s treatment is not an isolated incident and there are thousands of sick children, teenagers and adults in Ireland who are being denied medical care simply because they are on the autism spectrum.
It is unacceptable in 21st Century Ireland that this continues to be the case. Therefore I very strongly urge our elected representatives in Ireland to speak up for these vulnerable people and to change the legislation in this country to ensure that these vulnerable members of our society are not left to suffer anymore.
‘… there is no evidence supporting the attribution of behaviours such as head banging, night waking, aggression and posturing directly to the pathophysiology of autism. In fact, there is substantial evidence to the contrary, as reflected in a consensus report published in the journal of the American Academy of Pediatrics (AAP), which states that: “Care providers should be aware that problem behavior in patients with ASDs may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders.” (Buie et al., 2010a)…’
One of the most common medical findings in people with autism is gastrointestinal issues, here is a list of scientific studies that verify this finding. I would urge everyone that is considering voting on this ‘Autism Bill,’ to please familiarize themselves first with the huge shortfall in medical care being afforded to some of Ireland’s most vulnerable citizens and to question why there is no provision made in this Bill to correct the discrimination being meted out to sick children and adults due largely to misinformation, an indifference to the plight of these individuals and a failure by the Irish Medical profession to keep up to date with all of the research from the past twenty years into all of the medical interventions that are now available for this group but unfortunately are not implemented here in Ireland.
LINKS TO SCIENTIFIC RESEARCH:
It seems unbelievable really that there is such a mounting body of scientific evidence that children and adults with autism are very vulnerable and susceptible to a number of medical conditions and yet there is no provision being made in this autism Bill to safeguard the right of this vulnerable group to be able to access the same medical care as any other person without being discriminated against simply because they also have an autism diagnosis. Also there is not even a provision or stipulation in this Bill to attempt to raise more awareness about the huge shortfall in medical care that this group regularly encounter.
Here are some Case Studies from the document link above; ‘Medical Comorbidities in Autism Spectrum Disorders - A Primer for Health Care Professionals and Policy Makers,’ which I have given to Adam’s former doctors’ also but unfortunately it did not inspire any of them into investigating the medical issues that my son has. This unfortunately is all too common an occurrence in this country.
CASE STUDY 1:
Munair is a 5-year old boy with regressive autism. He was progressing reasonably well when he developed what looked like selfharming behaviour. Munair would frequently strike his jaw forcefully, always in the direction of the occiput. This would make a loud clunking noise. At the same time he developed a penchant for jumping from ever increasing heights. On examination he had bilateral purulent ear effusions. He was underweight and undernourished despite good intake. Amoxicillin was unsuccessful. Azithromycin helped significantly, but discontinuation led to recurrence. A five day course of azithromycin followed by every other day dosing led to a sustained and substantial improvement. The jaw-striking and jumping was thought to be an attempt to unblock his ears.
CASE STUDY 2:
Edward is a 14-year-old boy with a history of severe regressive autism. He presented with an 18-month history of altered behaviour. Sub-acute onset of self-harm, agitation, frequent night waking and latterly, aggression against others. Appetite was variable but largely maintained. Stools were reported as normal against a background of long-standing constipation. GP had referred to paediatrician, who referred to a paediatric gastroenterologist, who referred on to a neurologist. He was commenced on carbamazepine for mood-stabilisation. At consult he was agitated, preferred to sit, but frequently stood straight, pacing. He required constant one to one supervision, provided by his father. Edward struck his father twice during the consultation. He had no speech. No further examination was possible. He was re-referred to gastroenterology, referred on to a general surgeon and underwent a semi-urgent gastric fundoplication. Aggressive behaviour has not recurred.
CASE STUDY 3:
Steven is a 5-year old boy with marked regressive autism. He suffered sleep disturbance, self-selected dietary restriction and marked hyperactivity. He could follow no commands. He ate only dry, starchy food. Parents had placed a plastic shield over their TV due to Steven continuously slapping the screen. On examination he had marked tonsillar enlargement withmarked erythema, and reactive anterior cervical chain lymphadenpathy. Bloods showed mildly raised inflammatory markers and elevated eosinophils. He was commenced on a protracted course of co-amoxiclav for strep throat. Within three weeks he had calmed, seemed happier and widened his diet. He began obeying one and two stage commands. Parents reduced potential allergens in the bedroom and he began sleeping through the night.
CASE STUDY 4:
Joseph is a pleasant 10-year old boy with regressive autism. Visual learning was markedly improving, but speech and listening skills were disproportionately behind. He had a long history of ear infections with grommet insertion twice before. Further ENT review revealed failed grommets, reinsertion with titanium grommets failed too. He did not respond to allergy management, a trial of antifungals and a protracted course of azithromycin. He was duly referred to an immunologist, and subsequently found to have a mannose-binding protein deficiency. He has made good progress on long-term prophylactic antibiotics.
In conclusion I would like to again express my concern and disappointment that no proper research appears to have been done with regards to the now recognized scientific and medical evidence that exists that clearly demonstrates that the child or adult with autism is more likely than any other person to be at high risk of having any number of co-morbid medical conditions. At present in Ireland there is no awareness of this science and medical literature nor in my experience, is there even any actual interest in diagnosing and treating these vulnerable people. It is a human rights travesty for these children and their families. It is all the more horrific when you take into account the fact that the pain and suffering of children like my son is completely avoidable and unnecessary. There are treatments readily available for these sick children but unfortunately for these children and adults they just have no access to the medical care that they need and unfortunately at present, it is in most instances, being denied to them.
If anyone in interested in helping these children then I think their human rights need to be recognized in the new Autism Bill proposed and also I would ask all the T.D.s and Ministers and Senators who read this to please consider signing the petition here: to help improve the lives of Ireland’s most neglected citizens.
I am also cutting and pasting below, a letter I have just written to Autism Advocate, Adam Harris of ASIAM and would urge all Politicians to forward this letter onto any other autism advocacy group, or any other human rights advocacy group that they may be in contact with.
Also Minister Harris could you please send me the Compassionate Access Form to apply for medicinal cannabis for Adam, which I am still waiting on for a long time now.
Thanking you and Sincerely yours,
Mary, Brian, Sasha and Adam Godley
Mary, Brian, Sasha and Adam Godley
19 May 2017
Dear Adam Harris,
My name is Mary Godley and I am writing to you from Co. Kerry. Recently I was told you are soon to visit Kerry with regards to your advocacy work for children and adults on the autism spectrum. Firstly, I would like to congratulate you for your good work in raising awareness for the needs of all of us on the autism spectrum.
My son Adam, is 9 years old now and was diagnosed with autism (and several other psychological diagnoses), initially in 2010. Unfortunately, Adam is mostly non-verbal and suffers a lot from stomach pain and headaches. He has a list of medical diagnoses as well including a mitochondrial dysfunction, six diseases of the bowel, food allergies and a dysregulated immune system.
The year after my son Adam was diagnosed with autism I myself, was also diagnosed with Asperger’s Syndrome. As the more research I did into autism, the more I realized it fit the profile of the difficulties I have had in my own life. I have suffered from depression, social anxiety and various other issues all of which are related to my Asperger’s Syndrome diagnosis. I like you feel too that it is vitally important that people of the autism spectrum be accepted for who they are. Also that by having a diagnosis they can minimize their mental health issues and be allowed to have a true and comprehensive understanding of autistic way of being. This I do feel will also help them to reach their full potential.
As I myself experienced many difficulties as a child and a teenager because I was never privy to a diagnosis so that I knew from a young age that I didn’t fit in and that I was different and that I had difficulties that other people just did not have. Yet I had no idea why this was the case until I began to study autism in great detail.
My son Adam like so many children on the autism spectrum has found it next to impossible to access appropriate medical care in this country for his ongoing medical issues. It is very unfortunate here in Ireland too that some people on the autism spectrum who may mean well often actually only add to the difficulties that many people with autism often have accessing appropriate medical care. As so many people, doctors and the Health Service in Ireland do not seem to want to acknowledge at all that people with autism can become sick and often can have co-morbid medical conditions, just the same as everyone else. This is a link to an excellent document that describes in some detail the medical issues that people on the autism spectrum tend to often suffer from. http://treatingautism.org.uk/…/Medical-Comorbitidies-in-ASD
My main focus now is raising awareness for these children as really in Ireland at present they just do not have any voice. It upsets me greatly as a woman with Asperger’s myself and as the mother of a child with autism, that so many people of all ages in Ireland are not afforded proper medical care often because of a lack of awareness here that these children and adults are suffering and in pain and that all their distress is rarely always psychological but quite often is also because they are medically ill. I don’t think people that advocate for the autism community in Ireland ever mention this enough or raise enough awareness about this.
I have tried to do this and I have written to your brother many times about this as well as to other Minister’s and Politicians but unfortunately nobody seems at all concerned about the fate of so many on the autism spectrum here in Ireland. It is such a travesty for so many on the autism spectrum including a large number who cannot even adequately communicate their pain and suffering to anyone. Time after time I hear stories and I am sure you do too about how medical professionals in Ireland often pass off self-injurious and aggressive behaviours off as just being ‘part of autism.’ When often for the non-verbal in our community, this is the only mechanism available for people with autism to express their pain that they are feeling, often in their stomach or head.
In my own situation in eight years I have never yet been able to get any adequate treatment for my son Adam for his severe gastrointestinal issues from any doctor here. We have been to many and all have told me that it is just Adam’s autism that is causing Adam’s distress. Even when I have sent doctors and your brother the Minister too, Pillcam images of my son’s diseased terminal ileum (small intestine), and his Bowel Movements which often include 4 to 6 bouts of diarrhea every day. Still they still refuse to acknowledge that my son can have any diseases of the Bowel, simply because he also has autism. It is hard to believe that such cruelty and discrimination could still be common place treatment of people with autism in Ireland today. Again as you have autism too and your brother the Minister has Chrohns Disease himself so I really thought he would help to introduce legislation to ensure that ‘all,’ people with autism in Ireland should be entitled to the same medical care as everyone else. I have also written to him to plead with him that vulnerable disabled children should not be discriminated against or refused medical care, simply because they also have autism.
I have read too that you are concerned about what you deem to be ‘unregulated autism treatments.,’ This is an area that needs to be studied very carefully before throwing the baby out with the bathwater, so to speak. As the biggest obstacle for people on the autism spectrum in Ireland that is stopping so many on the autism spectrum from accessing appropriate medical care for their medical conditions, is actually because in so many instances anyone that seeks medical or health care advice for medical problems when they also have autism, is then accused of trying to ‘cure,’ autism. When often this is simply not true.
For example if my son Adam did not have autism and just had bowel complaints like your brother, then your mother would not have been accused of trying to ‘cure,’ Minister Harris, simply by insisting that his bowel complaints be taken seriously, investigated and treated. Also if she had taken you for the investigation of the same bowel complaints, she would most likely have been told, you were just fine and your bowel complaints were not indicative of Bowel Disease but instead were all a part of your autism diagnosis. I have used this example in the hopes that you might be able to see the huge discrimination and medical neglect that so many children in this country must endure everyday simply because they also have autism.
Therefore if you are recommending items to be added to the new autism bill being debated at the moment, then please do consider the fate of these 1000’s of children, teenagers and adults with autism in Ireland who are currently in serious dire straits because no-one is currently willing to medically examine and treat them appropriately for their medical complaints. Simply because there is an endemic perception at the moment that if the person has autism then they simply cannot have a co-morbid medical condition as well. As instead everything is psychological and attributable to the autism diagnosis. This really needs to change in Ireland and I really would welcome your input to improve the lives of so many in this country.
Also I will say the same to you as I have said to Fiona O’Leary of Autistic Rights Together in the past. Do you really want to be criminalizing and demonizing the parents of children who really already have very hard lives. You know as well as I do that there are currently practically no services, very few supports and many people on the autism spectrum do need 24 hour-care and most of the burden of this does fall upon the parents. You and I are lucky to be quite capable but unfortunately my son is unlikely to ever reach that stage.
Personally I doubt that any parent wants to do anything to purposefully harm their child and only wants what is best for their children. So you need to do a huge amount of research and be very methodical when deciding what is a harmful treatment that claims to ‘cure,’ autism and what is actually just good nutrition or something proven that is recommended by a Health Care professional. Also many, many parents would be so very happy to have the support and input of their doctors and other health care professionals. Unfortunately, though at present many feel very alienated from their doctors and do feel failed by them because they will just not investigate or treat the medical symptoms that these children often have.
Therefore, would the best way forward not be to petition the Government, the HSE and the IMO to stop discriminating against people with autism by denying them access to appropriate medical treatment. I feel very strongly that it is just not good enough in 21st Century Ireland to leave vulnerable, distressed people in pain and ignore their suffering simply because of their fear of being labelled as someone who is attempting to ‘cure,’ autism. When in actual fact this is simply untrue as instead they would only be treating co-morbid medical conditions which at present they are so very often not doing.
I am attaching some more scientific studies and articles here to reiterate my points:
As I said already I really would love to discuss these matters with you further, if or when you come to Kerry. Or alternatively I will be traveling to Dublin a couple of times over the next month or so and would be happy to call and have a chat with you then. Also it really is surprising that your brother does not do something about the plight of all those on the autism spectrum as he must know what our struggles are and of course the most prevalent co-morbid health condition is bowel issues of which he also has first-hand experience.
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