I'm Dan Jones, autistic best-selling author, YouTuber and Jediist Mind Coach for The Church of Jediism. I am author of best-selling autobiography Look Into My Eyes: Asperger's, Hypnosis, and Me and a number of other books around parenting, hypnosis, self-help, and wellbeing. As well as having autism I also have over 20 years professional experience working with children and their families in a variety of setting from residential children's homes, to social care and family support work, up to managing teams of parenting and family workers, and prior to this I worked within homes for those with mental health issues (including some residents with autism - which obviously isn't a mental health condition, but they were in the homes).
|Posted by Dan Jones on March 28, 2018 at 4:15 PM||comments (0)|
There is estimated to be a large number of undiagnosed autistic adults, some of these will have taken tests and attempted self diagnosis but not known how to or perhaps thought to seek official diagnosis (it can be daunting as the GP will be assertive and likely to bombard you with questions you need to know the answers to and under pressure it can be easy to leave the appointment without a referral and decide you will never try that again so it can be helpful to have support and take someone with you when you talk with the GP)
Some information relating to undiagnosed adults prevalence:
There are estimated to be about 600,000 undiagnosed autistic adults in the UK, most unaware that they may have autism. This is based on the findings mentioned in the links above.
Looking at the information on diagnosed autistic adults via the National Autistic Society website:
"Seventy per cent of autistic adults say that they are not getting the help they need from social services. Seventy per cent of autistic adults also told us that with more support they would feel less isolated
At least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support
Only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work
Only 10% of autistic adults receive employment support but 53% say they want it"
So even among those with diagnosis the figures don't look good, and among undiagnosed they are even less likely to get social services support, likely to feel isolated, likely to be experiencing mental health difficulties, a higher percentage are likely to be unemployed and even more are likely to be unsupported within employment. This is the situation I was in prior to my adult autism diagnosis. I couldn't access occupational health support, when I was unemployed I couldn't access back-to-work employement support.
Having an autism diagnosis has helped in many areas of my life, specifically around others understanding me and accepting me for who I am.
I always knew I was different to most others around me, I knew in school and I knew when I started work.
In my first job working in catering I couldn't understand the idea that customers are always right - when they are often wrong and that you aren't supposed to tell customers they are wrong. It didn't take long for me to be placed back-of-house working in a pot wash where I rarely encountered customers.
I remember my manager introducing himself and offering his hand to shake. I didn't realise that when someone puts their hand out it is for you to shake it in greeting. He asked why I wouldn't shake his hand. I didn't know but had to give an answer, so thought 'why didn't I shake his hand?' and all I could think was that I don't know him and don't know whether I like him, so why would I want to shake his hand, that seems like something people who like each other probably do, so I told him 'I don't know you and don't know whether I like you, so I'm not shaking your hand'
Others often saw me as unusual. Colleagues who got to know me when they worked with me in the past have said to me since my autism diagnosis that other colleagues and management often enquired about whether they had problems with me and that I was a bit odd.
I hadn't heard of autism or Asperger's when I was in my first job so I didn't think 'ah, maybe I have autism/Asperger's' I just thought something was wrong with me, that my brain had these glitches where it would make me respond in a way that was very different to other people.
While working in the pot wash - a job I would happily do for the rest of my life, I was content. Everything was predictable. But when asked to do roles interacting with others, especially customers I would go into meltdown. I would become very black-and-white in my responses and behaviours.
If I was asked to do something outside of my comfort zone I would just quit the job. I walked out of my first job three times, luckily I had an incredible manager who was calm and patient with me, he was very supportive and persistent. The first time I walked out was because I was being told I had to work in restaurants as a waiter, the second time was when changes were happening I wasn't comfortable with, the third time was when I was told I had to do a completely different role to what I was used to.
The first two times I walked out it didn't cross my mind that when you don't have a job you can claim benefits - although I wouldn't have been able to straightaway when I had quit the job. So I just walked out and went to the studio flat I lived in at the time and did nothing. I didn't think to try to get another job, I didn't think about where money was going to come from I just sat in my flat alone everyday and expected that eventually due to not paying my rent I would end up homeless and expected at that time that I would go and live in the woods. This thought didn't bother me. I had no heating, no electricity, no food, but I did have a persistent manager who kept turning up everyday and shouting up the side of the building to where my flat was - my bell didn't work and it hadn't crossed my mind to ask the landlord to fix it. Both times I eventually let my manager in and he negotiated with me what it would take to get me back into work.
The third time I was in a relationship so I had to think of someone other than myself, so when I walked out I knew I had to get another job. In those days all the jobs were on postcards around the walls of the job centre so I just looked at each postcard for a job that I thought I could do and then got the first one I found - which was working in homes for people with mental health difficulties.
When I became unemployed years later all the jobs were listed on the screens in the job centre and I struggled to find a job because there was a list of just added jobs but the rest you had to type in a search for which meant somehow you needed to know what you wanted to find before searching. Due to injuries from being ran over I wasn't able to do the work I had been doing and I didn't know what my skills would transfer to, so I didn't know what to search for. I tried asking for help but was told that to get help you need to either have a disability or be unemployed for over 2 years. I didn't want to be unemployed for over two years and I didn't have a diagnosed disability. After about a year I luckily ended up with a really good benefits advisor and she agreed to arrange for me to have a meeting with someone from the team which helps those with disabilities and let them decide whether they can take me on or not.
I was frustrated that I was still unemployed and that I couldn't seem to get any help. I had tried over that time to do jobs I applied for and was offered but each job I walked out on the first day. I walked out of a call centre job because it was too noisy, too chaotic and involved lots of talking on the telephone, I walked out of a job supporting people who are experiencing domestic abuse because there was too much I felt uncertain about, like having to navigate around a hospital, having to take phone calls, and I felt very exposed because of the layout of the office and I walked out of a job as a sales person in a shop a few days before my first shift because I couldn't handle the pressure of knowing I was going to have to approach customers and pro-actively sell to them.
The person from the support team agreed to signing me up. They supported me getting a job and supported me when I started the job, and luckily the person who was my new manager said on our first shift together that they think I have Asperger's is it okay if she treats me as if I do because this will probably help me and help our working relationship. This was a huge relief to me. For the first time there was very direct acknowledgement from someone that what I have thought to myself for a while is also what someone else thinks, and that they will help me in a way that will get the best out of me.
By this second time I was unemployed I had worked in adult mental health and some of the clients I had worked with had autism (although it isn't a mental health condition) and I could relate to them and their experience of the world and challenges they faced. Then I spent around 5 years working with children and teens with challenging behaviour and many of the children and teens had autism. It was doing this work that I started to think I may have autism/Asperger's. Many colleagues who worked closely with me used to joke about the similarities between me and the children/teens we were supporting. I used to laugh it off, but at the same time I started to wonder whether maybe I did have autism.
In one job I felt that I was facing discrimination for being different and often being outspoken if I didn't agree with something. I was threatened with the sack for things like not saying 'good morning', 'good bye' etc., to staff. I approached a union I was a member of, they agreed with me that I was experiencing discrimination but because I am a white, British male and I don't have a diagnosed disability there is nothing I can do about it and nothing they can do to support me in addressing the discrimination so I quit the job.
There are many things which I do that managers have pulled me up on often telling me I will face disciplinary action or the sack if I don't stop doing certain behaviours - like not using reciprocal communication like hello, goodbye etc, or for copying words or phrases people say or sounds I hear, or whistling or making sounds I hear in my mind, or tapping things, or being blunt or honest with people, or refusing to do things because they make me too uncomfortable.
It wasn't until I had lots of experience with working with people with autism that I started to think I may have autism. If I didn't start doing care work I don't know if or when I would have started to form a label for my differences and challenges and without having an idea that how I am may have a name I wouldn't have sought help or diagnosis and I think this is the situation many undiagnosed autistic adults are in, that they feel they are different, they have challenges and are perhaps unemployed, but don't know anything about autism and so don't realise they may be autistic and what they can do to seek diagnosis and access support.
In one job I had a manager who made sure my environment was conducive to me doing my role to the best of my ability, but then had a different manager take over direct line management of me who felt I should do as I'm told and didn't seem to want to work with me to ensure they got the best out of me. They wanted me to change my working environment despite the sensory challenges it meant I would face and the challenges with using the phone and with my ability to focus and do my role. Despite me being very clear with everyone about myself and what I found difficult and things I may say and do which could accidentally offend people (I used to start a job and just tell people everything because I didn't want people to keep making judgements and I didn't want to struggle or offend people), my manager didn't take any of this on board and would give me instructions once and if I misunderstood them they would say I wasn't taking my job seriously and not putting in effort and that I was doing it on purpose when in reality I would have done my best and put in as much effort as I could to complete tasks.
The challenge is that if you assume you understand something and have no reason to think you may have misunderstood what you were told you don't think to ask for clarity or to say you didn't understand. This was the same in school. My school reports often said 'Daniel needs to ask when he doesn't understand something', except I wouldn't have realised I hadn't understood until I did the work and got told it was wrong and I had missed the point of what I was supposed to be doing.
With that manager I constantly felt attacked and put down. If I didn't tell my manager I completed a task they would complain that I didn't tell them, if I did tell them they would complain I don't need to tell them everything I do, but wouldn't make it clear which things I needed to tell them and which I didn't.
In the end I became depressed and suicidal, and at that point I sought diagnosis because having a diagnosis was the only way I was going to be able to get occupational health support to ensure my work environment was conducive to me doing a good job.
I was lucky because I had helped families through the process of seeking diagnosis for their children so I knew what I would be faced with and that I needed to be prepared for the meeting with the GP with clear evidence of why I think I may be autistic. Despite this I felt that the GP appointment was an attack on me like they didn't believe me and didn't want to make the referral. Initially they didn't make the referral despite saying they would, and I got contacted by a counselling service offering me counselling. I explained to them that I didn't need the counselling I went to the GP for an ASD assessment referral. So I had to go back to the GP and go through the same again, this time they made a referral. From this referral to diagnosis took about 9 or 10 months.
If I was an undiagnosed autistic adult who didn't know the system and perhaps hadn't heard of autism I probably wouldn't have thought to seek diagnosis, I wouldn't have thought I had autism unless someone who knew me started suggesting it, and if I was in a similar work situation I would probably have gone to a GP saying I was depressed and unless the counsellor I ended up seeing (assuming I ended up seeing a counsellor) knew about autism and recognised the signs I probably never would have ended up with a diagnosis and would have continued to struggle in each workplace.
I was lucky, I have ended up in relationships where to maintain the relationship you have to learn to focus on the other person and to handle some of the uncertainty of things rather than run away and hide and isolate yourself. I have had a few good managers who, despite not having a diagnosis where very supportive of me and my individual traits, obviously a supportive wife, and I have stumbled into a career where I learned about autism and so recognised I may be autistic and I knew what I needed to do when approaching a GP about making an ASD referral.
I have also learned and improved over the years from feedback from people. For example, I did a job where almost a year into the job I was ran over, my work colleagues visited me in hospital and my wife visited me. My wife introduced herself and my work colleagues said they didn't know I was in a relationship. My wife was annoyed by this, but it hadn't crossed my mind to talk about my wife in work. I had no reason to think anyone would be interested in my personal life and no-one had asked me whether I was in a relationship or not, so it never came up. Since then when I met new work colleagues I would say 'I'm Dan, I have a wife, I like hypnosis and will talk about it a lot, I will probably accidentally offend you by being honest if asked questions, I never mean to offend so if I say or do anything that annoys you or offends you just tell me so that I can address it, I like to be alone a lot and so will sit on my own with headphones in and reading, I'm just doing this because I find it peaceful and calm and I don't really like socialising...etc'
|Posted by Dan Jones on March 27, 2018 at 12:50 PM||comments (0)|
During Autism Awareness Week and Autism Awareness Month (April) 2018 I am giving away a PDF copy of my book 'Asperger's Syndrome: Tips & Strategies'
You can find the book to download for free here: http://selz.co/EJXDCCl5E
All the best
|Posted by Dan Jones on March 21, 2018 at 11:45 AM||comments (0)|
In regards to Applied Behaviour Analysis (ABA). On the surface there is a lot that seems right with it. The main thing that is wrong with it is its premise about people being broken and needing fixing, although I am aware that there is a lot of variation in how practitioners practice, and for the record I have never been through ABA, but I am autistic and I do have over 20 years professional experience (and training) working with autistic individuals across the spectrum.
A lot of what ABA practitioners do, like positive reinforcement of desired behaviours and actions towards desired behaviours, and (for many practitioners) not reinforcing negative behaviours is something taught on almost all parenting courses. But the focus isn't just on helping autistic individuals with specific areas of their life, it is saying that some of the things they do are wrong and need fixing. There is also an issue of things the autistic individual likes being used as rewards, and not allowing these to be used in other areas of their life. Depending on what is used, this is also bad practice. If a child has a certain interest they should be allowed to do that interest, not be told they can only do it if they do x. My view is that the general rule should be if something positively meets any of the child's innate emotional needs that should be supported and facilitated, not turned into a reward - this is just good parenting practice.
This isn't to say that there aren't behaviours some autistic people do which don't need to be addressed, but they focus on things like stopping stimming, and forcing people to make eye contact without thought about why the autistic person does these behaviours. These behaviours are just treated as something they shouldn't be doing.
I like touching soft things and if someone is wearing something soft I want to touch it. I've read Of Mice and Men, I know how an overwhelming desire to touch soft things can have a negative impact and be seen as inappropriate behaviour so I don't do it, but when I was younger I wouldn't have a problem reaching out and touching the soft material - for me it was reading Of Mice and Men that made me aware of the potential reaction or thoughts and feelings others can have to what I saw as an innocent action so I don't do it, but this kind of behaviour is fine to help someone change.
It is also fine to teach autistic people how to relax physically and mentally, how to manage their emotions, etc, and exploring and teaching someone alternatives to stimming. It doesn't mean you are saying stimming is wrong or that they shouldn't do it, you are just trying to explore the idea of having more choice and freedom about how they behave. It could be that they decide to use some of the explored ideas in certain situations and stim like usual in other situations.
Stimming isn't the autistic person's problem, the people who usually have a problem with it are others around that person who don't think the autistic person should be doing the behaviour. For the autistic person it is a solution, not a problem, what you want is to help someone have a range of potential solutions available to them to choose from.
Likewise, not making eye contact isn't a problem to the autistic person, it is a problem to others who decide to interpret it as rude or not listening etc, to the autistic person it is usually a solution, it perhaps helps them to keep focused on what is being said so they take in more information, or it helps to reduce anxiety levels, etc... So again what you want is to help them have a range of potential solutions to choose from, like ways they can 'fake' making eye contact, or strategies for how and when they can make eye contact etc.
I've never experienced ABA and I'm not an ABA practitioner, so I can only talk about what I know about ABA from learning about it rather than any personal experience of it, but I do have experience as a professional working to support autistic individuals, and as an autistic individual myself. My understanding of ABA is that how it is usually practiced is behaviour modification through intensive positive reinforcement of desired behaviours and no reinforcement of undesired behaviours (although I am aware some practitioners have negative reinforcement of undesired behaviours and these can be unpleasant for the autistic individual and can cause them unnecessary anxiety, so you would want to check how a specific practitioner operates). As mentioned the main problem is who decides what is desired and undesired behaviour, and why do they think that behaviour is desired or not, and what do they think will happen if the child does the undesired behaviours? Another issue is some people talk about it like it is a cure when it isn't a cure - if someone is autistic, they were born autstic and they will die autistic. They will not be cured. They may develop coping strategies and strategies to blend in and strategies they will use in different situations to appear neuro-typical in specific situations, and for some they may get better at this over the years, but they will be working hard to do this and will need to have some area of their life at least where they can be themselves, not this artificial version of themselves. And some people may decide they shouldn't have to pretend to be anything other than themselves, and so they refuse to do so, and as long as they aren't causing harm to others or to themselves then this should be allowed.
In parenting courses the aim is to help parents develop an authoritative parenting approach. This approach works fine even with autistic children, although you must be even clearer with autistic children around boundaries, consequences and routines etc., and it is very important to keep everything at the level of understanding of the child, whereas most children can cope fine if the parent doesn't get it right all the time. So you want to have parents develop a child-centred authoritative parenting style, where they are led in how they apply that parenting style by the individuality of the child.
An authoritative parenting style focuses on showing high love and high limits and expectations. So it is different to an authoritarian parenting style which is high limits and expectations and low love (an army major style).
So you expect your child to do their best (not the same as expecting them to 'be' the best - you praise them for effort rather than focusing outcome only) you expect them to take responsibility for their actions, because you come from a place of love you show respect and respect their opinion, what you are doing is child centred, so the focus is on what is right for the individual child, not what are you going to impose on your child. That is the fundamental difference between ABA and what I would recommend, that ABA is like an authoritarian approach, it is dictating to the child how they must respond and what the practitioner decides is the right way to do things, rather than an authoritative approach which would be based on what is in the child's best interests as a unique individual.
Some could argue that some children don't know what is best for them, and over some issues (with all children) this is true, but the areas where someone should intervene are where a child may come to harm. So taking action because your teenage child has gone off with the local drug dealers because they see them as 'friends' who 'get' them, unlike you the old parent who knows nothing is a reasonable thing to do. The child doesn't see the risks they are placing themselves at and the role of a parent isn't to be the child's best friend, it is to protect the child and help them develop into a responsible, respectful adult.
Helping a child to learn to speak through calm positive reinforcement is a good thing, helping to improve and develop many skills is good. With ABA generally as most practitioners appear to do it nowadays there isn't a focus on negative consequences, but negative consequences are fine. There are two types people should use - natural consequences and related consequences. So if a teen goes out drinking and is drunk a bad consequence would be to shout at them and take all their belongings away, a good consequence would be, if they were sick, they clean it up. In the morning they get woken at a usual wake up time, they don't get to lie in bed and sleep, just like normal they have to get on with the day. The headache etc is the consequence of drinking the night before. If they put themselves at risk by their behaviour and it was relevant then you may have consequences like, if they end up meeting with those same friends and not being home when you tell them they need to be home by, because they could be at risk you will call them, if they don't reply and come home you will phone the police to find them etc... So these are negative consequences but relevant to the behaviour.
It is also important to help teach autistic children to manage uncertainty, to manage change, to manage sensory problems, because as they grow up all these things will happen if they are to be independent, to understand non-verbal behaviours and how different combinations of behaviours are linked to different emotional states, and communication skills etc. So teaching the skills and reinforcing this learning is good because these are things they will need to learn. This is just an extension on what parents should be doing with any children. Children need to prepare for independence, so they need to learn to do various household chores, to cook, how to interact with others in different contexts - like saying please/thank you/hello/goodbye, etc, how to catch public transport, safety awareness, what to do in emergencies, etc... all of this and a lot more needs to be taught to children/teens before they leave home. With autistic individual's they may well have a lot more that they need to learn because they have additional challenges they will face if they are to live independently. You can't avoid uncertainty, change, sensory challenges, social communication challenges, etc., and live independently and hold down a job. To avoid all these things means to be alone and probably reliant on others - either through direct support or through benefits etc and perhaps just living alone never stepping out of your comfort zone.
I don't see any of these as trying to change who someone is, they are teaching and developing additional skills so that the person has more choice. The non-autistic teen may leave home and never clean their flat, it doesn't mean they didn't learn how to clean. They know how to clean, they know it is an important skills, but they can decide not to clean if they want to, and it could be that when they end up in a relationship or reach a specific age they suddenly decide they want to clean after all, and as long as it doesn’t become dangerously unhygienic or pose a risk to anyone then their decision to clean or not to clean is their right. Likewise an autistic individual may leave home and live independently and may decide to go to work, work, then go home, and never socialise, because this is comfortable for them and they prefer it, but if they had to attend a team building work course for a weekend they know the skills to keep calm, to get through it, even if they would rather not do it. It could be that they decide not to do it, but that is their choice. The idea is to give them more freedom and choices rather than the only choice being 'I can't do that, I'm quitting this job'.
Another issue with ABA is that it is just 'identify the behaviours that we don't want the child to do and change them, identify the behaviours we want the child to do and get them doing those behaviours'. As mentioned, it misses the 'love' element, the respect for the child and what they are communicating by their behaviour and their inner world and emotions. So if a child gets angry when told to stand in line at school because they struggle with the noise, with the chaos of all the movement around them, with people bumping into them, touching them etc, and then they get angry, ABA would focus on rewarding when they can be in that kind of situation and be calm - a good practitioner would hopefully have taught them the required skills. But the reality is that they are unlikely to have been able to practice being in those situations in 'real-life' so what happens in a therapy session may not translate to the real-life setting. A preferable strategy would be to have the school recognise that the behaviour is communicating the challenges the individual is experiencing with the situation and look at what can make that easier for the child, like perhaps having a few smaller lines, or having them at the back perhaps able to wear headphones, or have them seated somewhere etc - obviously there are many factors you would look at to decide on the way forward. One thing I would do if it was me as a professional in this example is agree a way out of the queue but also get agreement for the child to do some of the strategies they have been learning and see how long they can successfully remain in the queue and whether they can remain their longer than they did previously before implementing what we have agreed.
Autistic people have a very emotional inner world and many autistic people either feel a lot of emotion or no emotion, there is rarely a nice mild in-between stage. So this has to be explored and respected as well.
I think one thing for parents to be aware of is that ABA isn't a 'cure' it isn't designed as a cure, it isn't meant to 'cure'. The autistic person is and always will be autistic. With any luck they will just have learned skills and behaviours that help them navigate the world better. So parent's shouldn’t seek it as a cure, but as support for themselves and their child if ABA is what they are seeking. ABA doesn't teach a child to be emotionally spontaneous etc, so the child isn't going to suddenly start hugging or 'showing love' how they want the child to just because they had ABA. This comes from teaching about emotional intelligence and theory of mind, and reciprocal communication etc, and even then (I'm nearly 40 and struggle with all this) it doesn't develop to be 'like normal', and if the autistic person is directly asked they will probably state that they are just doing what they think they are supposed to be doing for the situation. This can annoy people, like when one partner says to another 'I want you to wash up because you want to wash up' and the other partner says 'I am washing up because you want me to wash up and I want to make you happy'. This type of situation happens a lot with couples, and ends in unnecessary arguments. The first person should be happy the second person loves them enough to do something they don't really want to do because it will make their partner happy.
Here is some research around ABA (here is a meta-analysis study: A meta-analytic study on the effectiveness of comprehensive ABA-based early intervention programs for children with Autism Spectrum Disorders - ScienceDirect)
Over the years I have worked with autistic individuals across the spectrum. Some who would be described as having classic autism may well struggle for certain learning to stick, for example, one autistic girl I worked with had a tendency to run across roads without looking. It didn’t matter what was said to her about the dangers of this, she wouldn’t stop at the road side. This individual and others like her have needed far more intensive support, guidance and monitoring. I prefer the idea that parents learn the required skills and are supported to parent in a way that will get the most from their child. This support should include ways for the parents where needed to have ‘me time’ whether it is having times when an experienced professional will look after their child for a day, or an evening, or where the child can go away somewhere for a few days on a short break that is tailored to their interests, etc. I know support like this exists (at least here in the UK) but that it is often difficult to access due to funding and thresholds.
My view is that the goal with autistic children should be to help them develop and thrive in their own unique way. Behaviours that they do which don’t cause problems to anyone else and don’t harm them should be allowed to continue if the autistic individual wants it to continue. The child’s level of understanding should be what is considered when looking at what to teach, and the context things will be needed in. There needs to be more focus on listening to the autistic community about their experiences and what their behaviours mean to them, rather than making assumptions about what behaviours mean based on a neuro-typical perspective.
There is nothing wrong with many behaviours autistic people, especially children do, usually when you explore who has the problem, it is someone else – “they aren’t looking at me so they aren’t listening” your interpretation, not necessarily correct, “they are daydreaming they aren’t paying attention” your interpretation, not necessarily correct, “they are fiddling with something/doodling etc, they are being rude/they aren’t paying attention” your interpretation, not necessarily correct. There are many examples like this where because something isn’t the way they would do it, they assume it shouldn’t be done that way.
If a behaviour is likely to cause harm in some way to the self or others then it needs addressing, just like you would with anyone else. If it doesn’t cause harm to the self or others then you can teach alternative ways of getting the same outcome as the behaviour, but it is up to the individual whether they want to do their current behaviours or the alternative behaviours, but this involves understanding the internal workings of the behaviours from the autistic person’s perspective first and accepting that what may be seen as something different is likely to be a solution for that person, not a problem for that person.
|Posted by Dan Jones on February 19, 2018 at 10:35 AM||comments (0)|
It is horrific to think that there are people out there who think using Miracle Mineral Solution (MMS) is a good idea. I shared something about this on Twitter recently (https://twitter.com/AuthorDanJones/status/959198577611419650)
I struggle to comprehend how someone would conclude that this is a good thing and how they would decide to inflict this upon their child. Any parent using this to try to 'cure' their child will be committing child abuse which needs to be reported to the Police and Social Services as they are putting their child at immediate risk of harm. The parent needs help to be educated about autism and about what they can do to help their child with their child's specific needs.
There is NO evidence that this works to help autistic children, there is NO cure for autism, autistic people are born autistic, you don't cure how someone was born.
I think social media allows the idea of various false cures to spread and if a 'cure' sounds like an easier solution to the real answer then some people jump on it, and the way some people think is that the more 'the establishment' are trying to say don't do it, the more they distrust that and believe they are lying and they want to use the cure. I think there is a very worrying anti-science trend where people seem to have left logic at the door and decided that opinions and personal beliefs count more than objective questioning, rigorous research and peer review. This doesn’t just go for autism, but also for health and nutrition with all of the claims of detoxing and intolerances, etc, with therapy with claims of homeopathy and various other alternative health treatments, and in science with claims as ridiculous as the Earth being flat and human caused climate change not being real.
|Posted by Dan Jones on January 17, 2018 at 9:45 AM||comments (0)|
"Vaccines cause autism" is probably one of the main things people tell me when they meet me and hear that I am autistic. I find it very frustrating because obviously the research overwhelmingly points to this not being the case.
Last year I did a radio interview with a Spanish radio station and one question that came up - and one that comes up regularly, was around vaccines and how they cause autism. I was very firm about how that is complete rubbish and has been heavily researched since the claim was made and has been debunked. Many people I know who are into healthy living and the whole 'everything should be natural' thing (which obviously is a good direction to take where we can) are also anti-vax people, they believe that vaccinations cause autism and are untrusting of science, believing that drug companies benefit from us taking vaccines and so that is why all the evidence is showing that vaccines don't cause autism, and that the people to listen to are the 'brave few' who stand up and tell the truth against these big companies.
During trials and research into why and who had autism did these studies include people who were never vaccinated, are there people who are on the autistic spectrum who have never had a vaccination?
There are lots of people out there with autism who haven't been vaccinated. Autism is as prevalent among unvaccinated people as vaccinated, so vaccines have nothing to do with autism. I, for example, never had the MMR vaccine and I have autism. Most autistic adults born before the late 1960's won't have had the MMR vaccine and there will be people since then who either didn't have the vaccine or had the three vaccines separately.
Andrew Wakefield who suggested a link between autism and vaccines had a financial incentive for this to be the case, he had patented an alternative vaccine for people to take rather than the MMR vaccine which was his recommendation when suggesting people should take the MMR. Wakefields research was seen to be fraudulent, he also issued a statement of deliberately falsifying research and was struck off from practicing medicine in the UK.
In Japan they don't use the MMR vaccine and autism rates are the same as they are in the rest of the World.
The inoculation rate for MMR in the UK was 92% before the Wakefield research; after publication, the rate dropped to below 80%. In 1998, there were 56 measles cases in the UK; by 2008, there were 1348 cases, with two confirmed deaths. People ignoring all of the scientific research and the fact that no-one has found a causative connection and the fact that the original person who suggested it falsified information to make it look like there was (his actual research carried out by a team of 12 researchers said they found no causal link between the vaccine and autism, but Wakefield made a video claiming there was and started pushing that idea) is terrible, it has led to increased sickness and unnecessary deaths, and now there seems to be a community of pseudo-scientists feeding the idea, which is then getting celebrity backing and unfortunately people follow celebrities opinions more than scientists opinions and the emotional nature of the subject is just keeping people trapped in a cycle of believing a lie rather than focusing on what can be done to help those who are autistic and accepting it is a part of who some people are.
Vaccines contain mercury, aluminium and other poisonous substances, couldn't these cause autism?
None of the childhood vaccines contain poisonous substances at a level which can cause harm to people and most don't contain poisonous substance full stop. For example some vaccines need to contain formaldehyde which makes sure it is preserved and safe for humans.
The substances are lower than in most other products people consume and all have a purpose, for example the Mercury containing compound that used to be in the MMR vaccine in the past and is in no vaccines nowadays was to prevent fungus. Aluminium is in some vaccines but the levels are lower than naturally found in plants and animals that you eat and children get more aluminium from drinking breast milk than from their vaccines.
Most things we consume (including things like vitamin C, oxygen, water, etc) are poisonous if the dose is too high. In fact nearly everything is...
Aren't scientists just hiding the truth so that they can make more money for pharmaceutical companies?
There seems to be a tendency, that I think is growing because it is so easy for ideas like this to spread through social media, especially if something can absolve guilt or responsibility from others - like a parent feeling 'guilty' that they had a 'disabled' child, but if it was a vaccine then it wasn't their fault, it was the drug companies or the governments etc., and so they can channel their anger at that and what 'they' have done to their child. As humans we have a desire for meaning, we want answers, and when you know you are a parent who does your best and deeply loves your child you want to know why they are the way they are, you rightly know you didn’t do anything wrong to cause it, so you look for an answer that makes sense with your experience – like a child showing autistic symptoms around the time they were vaccinated. People are very good at misinterpreting data, so most people who don’t get their children vaccinated will have children who don’t have autism, but it isn’t the lack of a vaccine which led to their child not being autistic, it is that this is statistically what would happen, that most people aren’t autistic, so most children won’t be autistic whether they were vaccinated or not. Also mistaking two events happening near each other as one causing the other – it just happens that vaccines are given at a time when autistic traits are likely to start being more noticeable, it doesn’t mean vaccines cause autism, it just means vaccines are taken about the same time as autistic traits become more pronounced.
I have had people tell me maybe I am autistic because of vaccines or because of a vitamin deficiency or because of unloving parents, etc. Rather than people just accepting me for who I am, which is what I would prefer people to do.
|Posted by Dan Jones on April 4, 2017 at 6:10 AM||comments (0)|
When I was a teenager I didn’t have very good social skills. What helped me develop social skills was discovering hypnosis. I developed an interest in hypnosis for all the wrong reasons, I thought it would be a good way to control my environment – or at least the people in it. As I started learning I discovered that hypnosis has very little to do with manipulation and control of others, and is actually to do with communication skills. Social skills are something most children with autism need help with. If they are towards the high-functioning end of the spectrum they are likely to be intelligent and able to learn if they are interested in learning, so you can teach them social skills just like they would learn piano, or any other skill or talent. It is common for children to be told ‘not’ to do certain things, like “Don’t do this, don’t do that”. This isn’t helpful because it doesn’t teach what to do, all it does is tell you what you are doing wrong. Even learning the skills they will probably continue to struggle with certain things. I still struggle to say “hi, I’m okay, how are you?” when someone says to me “hi, how are you?” This simple reciprocal exchange eludes me most of the time, even when I practice and practice as I see someone approaching me, and I run through that sentence in my mind hundreds of times, but when I open my mouth all I say is “I’m okay” and I carry on walking.
Teaching them what behaviours are and aren’t acceptable is helpful, so it isn’t acceptable to grab something of someone else’s because you want to look at it, or to grab their clothes because you want to feel them. It is useful to teach about personal space, to teach about eye contact and gestures, and body posture, and the use of voice – like voice tone, volume, speed of speech, and varying pitch. It is also useful to practice different scenarios they find themselves in, and have them learn to mentally rehearse scenarios, so that they can practice situations in their mind. This is something I frequently do, I will practice conversations, the different way conversations will go and what I will say or do during the conversation. This all gets me through most interactions with people. I still struggle with extended periods around people, and unexpected situations, and where things don’t go to plan, but have found I understand what is and isn’t socially acceptable much better now. Some difficult ones to break are that it is socially expected that you will lie to people, rather than be honest with people, and I struggle with knowing how to instigate social interactions.
Look Into My Eyes: Asperger’s, Hypnosis, & Me by Dan Jones is available in Paperback & Kindle Here is a link to your local Amazon store: http://apn.to/prod/1542551196
|Posted by Dan Jones on April 4, 2017 at 6:10 AM||comments (0)|
Those with autism often respond in a primal way. They want one message communicated to them, and will usually communicate one message back. They will be happy, sad, angry, anxious, they often struggle with subtle emotions like annoyance. This isn’t to say they don’t experience subtle emotions, but they find it difficult to recognise them if they do experience them, so they will often feel angry and be angry, they won’t feel annoyed which in most people would lead to a more measured response before full-blown anger kicks in. For me personally for example I am normally ‘okay’. I don’t feel happy, sad, angry, or anxious, just normal. For most situations this is how I would describe myself. Then when the microwave starts beeping, for example, I am angry, If I am doing something like working on the computer and want to finish what I am doing before going to the microwave I will be angrily swearing at it to shut the f*** up for the full minute that it beeps for. I can see this is an over-reaction, but it happens every time. As soon as it stops beeping I am ‘okay’ again. Anything which triggers discomfort, whether it is due to excessive sensory stimulation, or uncertainty, etc., is likely to trigger the fight or flight response in the child, they will either become anxious, angry, or they will freeze and shut down from the external world.
They are also likely to have a black and white mindset, so they may be working well in class in school, then one small thing happens and they go completely the opposite way, they shut down, or get angry, or suddenly refuse to do anything. This can seem to come out of nowhere because others around them don’t necessarily recognise the patterns of what just happened. The child themselves may not be able to reflect on what happened to be able to understand why they went from calm to angry. One way to help find out what happened is to ask “what happened” and ask for a description of what they were doing before they got angry up to when they got angry. If you ask “why did you do that?” they are unlikely to know why, and so not likely to be able to answer this question. Asking “what” instead of “why” is more likely to lead to giving you the pattern of what happened, and you have a chance then of piecing together the “why”. An example of this was a child who was sat at home playing a handheld games console, then he got angry and threw it across the room, and started being violent. Asking why just got the answer “I don’t know, I just felt angry”. Asking what happened elicited that he was sat in the living-room, the TV was on in the background, he was playing his game, then he felt angry, threw his console, and became violent. The mum analysed what he had said and realised that the TV programme that was on was a talk show where the topic was absent fathers, and it was an emotive programme. The child’s father was absent and made no attempted to be in his son’s life. It was most likely this which triggered the sudden aggressive outburst. The child wouldn’t have noticed or worked that out by asking him why, but the parent could work it out. What made us confident that this was the cause was that it fit with other outbursts which had happened and what was occurring during those outbursts, like an outburst in class when the school children had to make Father’s Day cards.
Look Into My Eyes: Asperger’s, Hypnosis, & Me by Dan Jones is available in Paperback & Kindle Here is a link to your local Amazon store: http://apn.to/prod/1542551196
|Posted by Dan Jones on April 4, 2017 at 6:05 AM||comments (0)|
Communication is different depending on the individual child. Those with low-functioning autism may struggle to understand and comprehend some things, whereas those with high-functioning autism may understand and comprehend more, but may find it boring or illogical, and so not be interested in listening, and then there are all of the people in-between. As someone with autism I have always found it easier to understand and communicate with animals than people. This is because animals generally don’t have multiple levels of communication. If an animal is calm it communicates calm, if it is scared it communicates fear, if it is feels the need to fight it communicates aggression. People have subtle expressions of communication which are very difficult to understand, they also have mismatching communication, they may smile and say everything is okay, while actually being angry about something, and then when you assume they are okay – because that is what they have said, they get annoyed that you didn’t realise they were angry.
This really gives an idea for how best to communicate with those with autism. They need the communication to be clear and unambiguous, so say what you mean, say what you want to happen and expect to happen, and make sure that your verbal and non-verbal (including tone of voice) communication matches up. Be as precise in your communication as possible. If you don’t want your child to run, don’t say “don’t run” because that doesn’t communicate what you want, it only communicates what you don’t want, so it is likely to create confusion. Say “walk”. If you don’t want them jumping on the furniture, don’t say “don’t jump on the furniture”, say “sit down”. Often those with autism will need you to be clear and make firm decisions where they struggle to do so, and to help them make decisions by reducing options down to just two choices for them to decide between, and if they can’t decide then you select for them. You could ask “what would you like to do today?” If they say they don’t know, then you could say “would you like to do x or y today?” If they still can’t decide you can say “we will be going out in x minutes, so get your shoes and coat on, we are going to y today.” You will know with your own child what is best for them, whether they are good at making decisions themselves, or whether they can make decisions if they have just a couple of options to choose from, or whether they need to be told what will be happening. It is very comforting to have the structure of being told what will be happening, as long as those things are things you are comfortable doing.
Look Into My Eyes: Asperger’s, Hypnosis, & Me by Dan Jones is available in Paperback & Kindle Here is a link to your local Amazon store: http://apn.to/prod/1542551196
|Posted by Dan Jones on April 4, 2017 at 6:05 AM||comments (0)|
Those with autism often have extremes of emotion, they can be calm one minute and angry the next, sometimes without any obvious cause. This can be intimidating and frightening for parents. There are some helpful ways to manage anger. Obviously, the best way to manage anger is to reduce the chances of anger occurring. To do this a parent can find ways of communicating which, as far as possible, don’t create opposition. This isn’t saying don’t put boundaries in place, just reducing how often you say the opposite to the child. So if you say “no” this creates conflict, but there are many times when there is alternatives to the word “no” which can be used, like saying what you want instead of the word “no”. So a child may ask for something (like a magazine), your answer is going to be “no”, so instead of saying “no” you may say “you can… (have a magazine at the weekend/read the ones you have at home, etc)”. Like anything, this isn’t a guarantee that they won’t get angry, but when you don’t present the opposite view it often reduces the chances of conflict occurring, which could otherwise turn to anger. You can also notice triggers and so intervene with distraction when you know a trigger is likely to occur.
When the child is already angry anything which feeds into the fight or flight response is likely to escalate the anger. So any behaviours which could be perceived as threatening or trapping the child will make the situation worse, behaviours where the child feels they are safe and not trapped or threatened help to reduce anger. So talking calmly (not saying “calm down”) and quietly, not shouting or displaying anger in your voice, sitting beside the child (sitting is a calming act, so this also helps you to feel calmer), or away from the child, not standing in front of them towering over them. Giving them a couple of clear options which give them the chance to have a safe way out. For example; I worked with a teen who became aggressive, he was cutting things with a knife and threatening to cut anyone who came near him. I said I was going to sit in the seat (gesturing to a specific seat) and want to just talk to him see how I can help, if he decides he wants to attack me that is up to him, but I want to just see how I can help. I then sat down, we talked and the situation was resolved calmly and without further incident. Whereas a teen I was working with in a local school got angry, he kept saying he wanted to go to a quit room, which had been an agreed location for him, the teacher dealing with him told him he isn’t going anywhere until he calmed down, the teen felt trapped and eventually injured the teacher so that he could get away, this got him permanently excluded, and most likely could have been avoided if the teacher let him go to the quiet room.
|Posted by Dan Jones on April 4, 2017 at 5:55 AM||comments (0)|
I received an adult diagnosis of autism spectrum disorder (ASD) a few years ago. I suspected I had autism for many years, but I didn’t want to be labelled, so never sought diagnosis until my life hit a point where I felt it was the only way I would get the help and support I needed.
Growing up I had always been different to others around me including my three brothers. My mum described me as a little scientist. As a child I was generally quiet, I tried to keep away from people, I would often do things alone rather than with others. My dad was concerned about me saying that he thought something was wrong with me, but found it difficult to put into words and be taken seriously about his concerns. He was concerned about many things including that I didn’t seem to know how to play, and I didn’t seem to be able to use reciprocal communication unless told to do so. Back in the 1980’s his concerns were dismissed. Mum said from birth I never liked being hugged, and would never hug back if I was cuddled, I didn’t have any issues walking away from mum to go into nursery school, even on my first day. She described how I walked straight in without looking back or acknowledging her, whereas my three brothers all got upset and distressed at leaving their mother on their first day of school.
Mum had tried to organise a birthday party for me when I was about 5 years old, but no-one attended. This apparently didn’t particularly bother me, but bothered mum.
I rarely felt a need to speak out, I kept myself to myself, so through school I was largely ignored. As long as everything was predictable and as I wanted, things went fine in school, but if anyone tried to do anything like giving me the bumps or jumping on me I would do whatever I had to do to make myself feel comfortable again. I didn’t care what extent of violence I would have to use, or who I would have to be violent to. If I was unable to escape the situation without violence I would do whatever I had to do to feel comfortable again. I was very stubborn, because I hate change I would refuse to do things when change occurred. This continued into my working life. When I started work I would walk out of the job if they made changes to my work situation. I wouldn’t think about the consequences of this, all I would be thinking is that I am not happy with the situation, so I need to leave the situation to feel comfortable again. I would be blunt with managers telling them when they are making stupid decisions, and telling them to shut up when they are not listening.
In my early twenties I started working in mental health, and then moved into working in children’s homes before moving into family support work where I was supporting those with autism and their parents and carers. Colleagues would often comment on how I was like the autistic people we supported, and as time went by I considered that I might be on the autistic spectrum. I never considered seeking a diagnosis because I didn’t like the idea of having a label, until workplace discrimination which I had faced in many jobs I had done, reached a point where I felt helpless and trapped, and I became depressed to the point where I wrote a date in my phone that I would kill myself because that seemed like the logical solution for resolving my situation. It was at this point I decided to seek diagnosis, feeling that it could lead to me getting the support I need to help improve my work situation. The diagnosis has been more beneficial for me than I could ever have imagined, it has helped others around me understand me better, it has helped me be more open about myself with others, and it has allowed me to help others through talks and writing my book Look Into My Eyes.
Look Into My Eyes: http://apn.to/prod/1542551196 (Link directs people to their local Amazon website. The book is also available from other retailers as an ebook (Kindle, iBookstore, Kobo, Nook, GooglePlay, etc) and paperback (retail paperback edition ISBN: 978-1326917340)