It’s always good to hear directly of the experiences of other parents and of their children’s progress. We are all faced with similar issues in having an autistic child, and have much we can learn from each other, from every fight, despair, victory and struggle. I thought it was time to update you on our personal circumstances, because a number of important developments have taken place, ones which might be helpful for you to know about for the future.
Our children are growing up and becoming adults, even if we can’t quite believe it. In our eyes they remain so vulnerable and child-like. Even those considered to be high functioning, who have been diagnosed as having Asperger’s Syndrome, are potentially at risk of having insufficient support, inadequate emotional protection and restricted opportunities. And there are many potentially significant risks for those who don’t receive adequate support. The stories abound. So, how can we best help our children manage this transition to adulthood?
As parents, we are advised that every transition for children is difficult. We heard this for the first time when our children left nursery to begin primary school. Can you remember how scary that was? And then, when they started secondary school, wasn’t it even scarier still, as the complexity of their social world and their need for independence, better judgment and self-help skills increased? The transition I have recently faced, as my son reached 16, was for him to be legally categorised as an adult. There are, of course, still further major transitions to come, with the one we all fear the most being the one that we will not be able to witness. I don’t intend to make this piece depressing: I would like it to be constructive, because, in fact, we can change our children’s lives for the better. I think we are lucky to live in the UK, where there are some support mechanisms available, even if it can require considerable effort to access them.
Lloyd’s transition to adulthood was initiated by our school head teacher and I am most grateful to her for pointing us in the right direction. We were referred to the social service transition team which provided an assessment of our needs, both my son’s and our family’s. This assessment resulted in some funding being made available. I could have used this funding to request a placement for Lloyd somewhere, but I didn’t consider this to be a suitable option, at least for the moment, mainly because he is too unwell physically. Lloyd has Lyme Disease, which was only diagnosed recently and has therefore only started to be addressed with the support of the ATT. The consequences of him having untreated Lyme Disease, almost certainly contracted at a very early age, have been devastating. We have witnessed a worsening of his epilepsy, chronic fatigue, motor, social and communication skills, without being able to significantly halt the regression until treatment began. I will update you on this at some stage in a separate communication, but for those who are interested, you can follow our story here.
The funding package provided by the social work department covers 30 hours a week of 1:1 support from a team of carers employed by Autism Initiatives. This is a UK-wide charity with an excellent track record for the provision of support services to the over 16s. The staff are knowledgeable about autism and epilepsy, and are dynamic, enthusiastic and young. They are open to learning, to differences in individuals, and are non- judgemental. Just what we need. The funding also covers an extra 20 hours a week of support (coming from respite care and care at home funding pockets). We have put this towards employing our own ABA tutors with the help of an organisation called the Lothian Centre for Inclusive Living (LCiL). This organisation provides assistance with payroll with me effectively being an employer. Our tutors are therefore classified as staff who pay income tax, (which they can reclaim, depending on their financial situation.) There is cover for holidays and sick leave, which I think in general is better for them. This package is available for 48 weeks of the year. LCiL also provides guidance in drawing up a work contract which covers insurance, time sheets and other employment aspects, for every staff member. The funding is made available by Direct Payment. I have a bank account into which the money is paid in instalments throughout the year. I also have a card for this account which I can use to pay all agreed providers and staff on a monthly basis.
On a separate issue, I also sought legal support to become my son’s welfare and financial guardian. This was granted by the courts when he turned 16. I received some support from Legal Aid for this process, which was conducted by a firm of solicitors who routinely deal with such applications.
The great advantage of these new developments is that we now have the flexibility to provide what Lloyd needs. We are able to cover all relevant areas: health, education (academic), self-help, independence, communication, leisure, physical etc, each at an appropriate level. Our entire programme continues to be supervised by 2 ABA consultants, one local lead therapist who shadows and trains staff as required and one who supervises the programme every 2 months, and who has an excellent knowledge of anything we might encounter or need. In total we have 10 staff in our team.
The majority of our curriculum is iPad-based. We use it to record data, activities, progress, any problems, and to communicate with the entire team (e-mails of notes, performance, a log of activities, a diary, videos etc). The iPad also contains all the information required for various teaching procedures, care plans, epilepsy management, information about my son, emergency contacts, safety procedures. As far as Lloyd is concerned, he can use it for entertainment (music, videos, internet, fun activities), to assist him in planning activities (photos, schedule of activities, prompts, visual cues, social stories), and for learning. The iPad is suitable for any type of learning. I should say that using an iPad doesn’t mean that we have become impersonal, using it as a substitute for interaction with people. However, it is so effective in teaching the pre-requisite skills for socialising, so visual and motivating, and it requires only minimal motor skills. I therefore really believe that this tool is essential to our programme, and will become increasingly used by others with disabilities, especially autism. I have to remember to back up the iPad regularly though!
On the financial side, we have of course received additional support from the government, through the disability living allowance (DLA). Through the motability scheme, we have access to a car which every staff member is insured to use. This allows Lloyd to go to the gym, to climb, to swim, to use a sauna, as well as to attend other social groups. The reality is that he isn’t stuck at home. If he’s unwell, of course, he can stay at home to sleep and recover. This is a new luxury. I use the word ‘luxury’, but really this is nothing more than every family like us deserves to have. If we’d had this support earlier, I believe we would have been less affected by Lloyd’s developmental issues than we currently are.
I am often asked, what next? My answer to this is that right now I can only deal with the present. For the first time, we have the opportunity to give Lloyd a fully supported, flexible, stimulating and effective structure, for 50 hours a week. This will allow us the opportunity to address his health issues which we have the means and knowledge to do. Where this will lead him in five years’ time, I don’t know. But I do hope it will be a place where he won’t be prone to seizures, where he will be safe and supported in his choices and his emotional needs, and included in a supportive community. Access to all life-long learning is a right we should all request for our children.
Perhaps things will get easier as we continue to progress. It looks that way at the moment. So, fingers crossed!
Please feel free to comment on this post on our web site. Our collective knowledge is huge: together we are stronger!
Neuroborreliosis refers to the Lyme infection of the nervous system. The Lyme spirochetes actively invade the cerebrospinal fluid (CSF), the meninges, and the brain shortly after infection. The severity of the symptoms that occurs following the Central Nervous System (CNS) infection depends on the health of the individuals, particularly the immune system. CNS complications in neuroborreliosis generally involve an inflammation initiated by the Lyme spirochete.
There is a growing interest in the possibility that some children diagnosed with autism could in fact have a diagnosis of Lyme disease. You only need to google Lyme and Autism to see numerous entries on the subject.
I will flag a few links of interest here:
Additionally please take a look at a leaflet made by the International Lyme and Associated Disease Society ILADS- Psychiatric Lyme Disease: What psychiatrists should know about Lyme. The leaflet can be seen here:
What I would like to stress is that autism has previously been linked to a number of infections, Herpes, Measles, Mycoplasma for example. Fundamentally speaking, whether it is caused by one pathogen or another is not very different. In fact post-mortem brain Lyme Borreliosis resembles very much the images obtained from post-mortem autistic brain samples. There is wide spread microglial activation, indicative of brain inflammation. To view some pictures of Neuroborreliosis brain you can download the Miklossy et al 2008 paper here, or alternatively view Figure 4 here, I will at a later stage review the literature concerning some autism post-mortem brain studies.
We can very well have a scenario in which the brain will be affected both through direct infection and through indirect inflammatory processes. One could even push this scenario further by saying that the inflammation might not even resides primarily in the brain to cause brain dysfunction, but instead anywhere in the periphery, in the digestive system for example. After all, it is well known that the brain, the hippocampus in particular is sensitive to an immune deregulation. The brain must have this sensitivity in order to control the beahviour of a living organism, to respond more effectively to the immune challenge. It is very possible that with such a scenario, autism is unique in its presentation due to the developmental stage during which the organism is affected.
When my little boy lost his ability to speak at the age of 6 years old, becoming withdrawn within 2 weeks, unable to function at school, being overwhelmed in most public settings, he received, plugged out of the air, the magical diagnosis of autism. This was based on 10 min observation in school conducted by an autism expert. That is all what he received. No investigations were made. My son was autistic and an alternative school placement with other autistic children was given in compensation. The novel symptoms he presented with, his great health fragility, the sudden development of his epilepsy, which progressively worsened over the years, his gut problems, his immune impairment, nothing received any kind of attention, unless I forcefully requested for some tests to be done, mostly unsuccessfully. We had a brand new label and there was no question to ask about this. Asking questions was seen as being a difficult parent.
Unfortunately, his case is not unique. Nearly 6 years later, I am working to assist other parents to access to the medical investigations my son should have received minute one after becoming unwell. I can report that in a group of 400 children seen at the Autism Treatment Trust in Edinburgh, 60% present with similar sudden regression and occurrence of novel autistic behaviours. Whilst many have experienced this regression around the age of 18 months, other children become affected in later years, at the age of 2, 3, 4, 6, 8 or even 9, years old. Christopher Gillberg has reported other cases of regression in autism at age 14, 30 and 31 years old (Gillberg 1991,Gillberg 1986 ). The difference in these cases, was that Prof. Gillberg had the genuine interest to investigate the cause of their novel behavioural traits right at the onset of their regression. And what he found was in all 3 cases reported was viral herpes encephalitis. A condition that is reversible because Herpes can be treated with anti-viral drugs. Did these people really have autism? No, they had viral encephalitis. Not autism. Christopher Gillberg has reviewed in his book, the Biology of the Autism Syndromes, coauthors with Dr. Mary Coleman the many genetic, environmental, viral, metabolic conditions that come with the features of autism. Are these conditions really autism? How could a condition come with so many different unrelated etiologies? Does autism actually exist?
To make matter worse still, we have some individuals who suddenly decide on day, that they are also autistic, most notoriously Donna Williams, whom I had the opportunity to meet in Edinburgh last Sept 08. Donna Williams was to me a very puzzling character right from the outset, though I must acknowledge that the concerns over her diagnosis were raised to me by others. But indeed there seems to be a great inconsistency with the symptoms she was reporting to experience and her ability to discuss and report them. Something that is rather hard for people with autism to actually do. A very demonstrative set of investigations questioning the validity of her diagnosis can be found here. I have since met other adults who also claim a diagnosis of autism, and present with similar puzzling social and emotional abilities very uncommonly seen in autism.
Michael Fitzgerald (in his book the Genesis of Artistic Creativity) and others have argued that many notorious historical figures, such as Beethoven, Handel, Van Gogh were also autistic. Equally scientists such as Einstein, T. Edison have also been presented as being autistic. But are these retrospective diagnoses a myth or a reality?
So Autism: What the hell is that about?
I am calling for the support of parents and professionals to request that proper medical and psychological investigations are conducted on all children receiving a diagnosis of autism today. Autism as defined by Kanner in 1943 is a different condition than the ones we see today in as many as 1 child in 100. To conveniently hide the true reality of the problem with an incorrect diagnosis of autism is an hypocrisy that can only delay the urgent need we have to deal appropriately with the issues.
Somehow I reverted again to a traditional approach to treating disease: Lyme is a spirochete bacteria, therefore we must treat it by killing it with antibiotics. I knew though there were challenges ahead of us, because the spirochete exists in three different stages (Spirochete, cyst, and spirochete colonies), is intracellular, evade the immune system, has the ability to mutate, and can affect essentially any organ. For a microscopic view of this pathogen in human brain samples of Lyme neuroborreliosis and in vitro culture of chicken and rat neurons as well as rat and human astrocytes, please check this paper from Miklossy et al. 2008 (see illustrative figures 1-4). The different forms which this pathogen can adopt require the use of several antibiotics simultaneously. The Cyst form in particular is most resistant. Ninety-five percent of Lyme spirochete can encyst within one minute and remain viable for up to 10 months, survive several cycles of freezing and thawing. Reconversion to motile can occur rapidly within one hour given the right conditions. The cysts survive quite happily in the digestive system from which they can spread throughout the body.
Figure: 1: Characteristic morphology of Borrelia burgdorferi (Dark field microscopy images of Borrelia burgdorferi strain B31 showing the usual spiral form of spirochetes (A) and their agglomeration into colony-like masses (B)
F-H: Atomic force microscopy (AFM) images of Borrelia cysts. Rolled spirochetes are clearly visible in F (strain B31) and G (strain ADB1). Arrow in G shows that the cyst is formed by two spirochetes rolled together. H: The cystic form is entirely covered by a thickened external membrane masking the content of the cyst (strain B31).
Figure 3: Atypical and cystic Borrelia forms following 1 week exposure of primary neuronal and astrocytic cultures to Borrelia burgdorferi. C: OspA positive Borrelia spirochetes closely surrounding neurons (strain B31). D: Atypical filamentous and ring-shaped cystic, apparently intra-cellular spirochetes in a neuron (strain B31).
Figure 4: Chronic neuroinflammation in the frontal cortex of a patient with Lyme neuroborreliosis. First column (A, D and G): Accumulation of HLA-DR (A) and CD68 (D) immunoreactive microglia forming clumps, and GFAP (G) positive large reactive astrocytes in the frontal cortex of a patient with Lyme neuroborreliosis.
A further complexity related to the fact that my son’s health is extremely fragile and that he is very prone to seizure, especially following an immune challenge. Treating Lyme with antibiotics is known to cause a Heirxheimer reaction, which is essentially equivalent to an increased release of bacterial toxins, with inflammatory consequences. This is very similar to the Lipopolysaccharide (LPS) model of rheumatoid arthritis caused by injection of collagen molecules followed by LPS injection. LPS are molecules found in the outer membrane of Gramm negative bacteria. They acts as potent endotoxins leading to the secretion of pro-inflammatory cytokines and Nitric Oxide. They will cause an endotoxic shock, increasing the auto-immune response to collagen. What happens during antibiotic use is very similar. There is an acute release of a wide range of bacterial endotoxins which drain the immune system, pushing it towards inflammatory stress and potentially auto-immune response. Causing such reaction is a challenge to affected individuals. The reaction is notoriously severe with people describing all the symptoms returning all together concentrated during the reaction. The problem is in the case of my son, that it causes him an increase in epilepsy. Each time his symptoms are clear unwellness, epilepsy, raised lymphocyte count and fever. I have not yet managed to control this reaction (see separate section on Heirxheimer).
We have tried many antibiotics, azythromycin, doxycyclin, Zinnate, Ciflox, Flagyl, Bactrim, Rifampicin, Bactrim, minocyclin and ceftriaxone i.v. Ceftriaxone is the antibiotic that appears to lead to immediate benefits, however, within 10 days of treatment, my son was too unwell with epilepsy to continue. Ceftriaxone is thought to have the best penetrance in the Central Nervous System (CNS), however, it does not work on all the Lyme stages. It has also anti-inflammatory function, which was making this antibiotic a prime candidate. The second best choice was minocycline, again because of CNS penetrance and anti-inflammatory properties.
I am not sure if it makes a great deal of sense to detail the treatments proposed, but for the sake of illustration, I will show what has been suggested to us. However, as I said, we have not managed to do this for more than a few weeks in total and not for any longer than 2 weeks without interruption.
An alternative protocol (oral antibiotics only) was proposed:
I might consider these treatments again, but for now, I feel a much more gentle approach is required. This is where I started to investigate the potential use of plants. The information compiled below come from reading Healing Lyme and also looking at some protocols written by Dr. Klinghadt.
Introduction: Realising that medicine does not have all the answers
A lot has already been written about Lyme Disease, so I will avoid repeating, focusing instead on our own experience: symptoms, diagnosis, treatments, failures, hopes, doubts, and other emotions that flow throughout the process.
To step back in time though and in ways of introduction, let me explain that I started my quest in science as a student, holding a very naive view of what it was about. I thought science’s main purpose was to solve problems, mysteries and focus on making people’s life better, either through providing greater knowledge, or by directly alleviating people’s suffering. I thought, science was above vile, it was the closest to truth, that it was immune of jealousy, greediness, manipulation and corruption. I soon realised as a student working in the HIV field, that science was no different than any other area of human activity; there was some good about it yes, but there was also a lot of less good. Essentially, all too often research was directly driven by the funding opportunities which in turn were directly related to market values. Market values are not driven by knowledge or greater good, they are only driven by whether or not they can generate an economy.
It is one thing to come to realise this as a student and fumble in the hope that this would come to make greater sense one day, that somehow there would be ways to reconcile all the conflicting views and bypass the unethical influences. But it is yet another thing, a far worse realisation still, to appreciate that these great limitations had a direct impact on the health of our children. Hitting a brick wall was exactly how it felt, when I ask for support in understanding why my son was sick. I only received in response, preconception, further misunderstanding, and arrogance. To put it bluntly, traditional medicine could not care less for what we were experiencing. In a way, it was as if this was outside their remit. They had made hastily their diagnosis, Autism, and there was nothing to do about. The least they would hear from us, the happier they were. We were actively discouraged to look for answers, arguing that one day, I should come to term with the fact that my son was disabled and that in many ways, I should feel grateful that he was not more affected, as some unfortunate children can indeed be. Was I going to settle with these views?
I later came to appreciate that traditional medicine can deal with simple health issues, most acute problems in fact can be addressed effectively (appendicitis, bone fracture, classic infections and so on). However, the situation is very different when it comes to a range of chronic and pervasive conditions, especially as I came to realise, when brain function and behaviour are affected. I had also realised, ages ago in fact, that medicine particularly was incredibly compartmentalised. Each consultant having some understanding within their own field of expertise but having little understanding or even appreciation of how other organs, physiology, body function influence their own system. Isn’t it obvious though that biology is all about integration and most health problems, especially if chronic, are about deregulating this integration?
Dr. Stephen Buhner in his book “Healing Lyme” describes western medicine as technological medicine, stating that they are rather blunt. “They are concerns with kill (antibacterial), remove (surgery), reduce pain (opiates or the equivalent), reduce inflammation (corticosteroids), or force it to do what you want (hypotensives and so one). Subtle understanding of the complexity of physiological interactions and knowledge of how to enhance the response of the body to disease are underdeveloped. “
So, no the diagnosis of Autism was not the correct answer: It was absolutely not explaining my son’s developmental history and it was not explaining his symptoms either.