research boffin1
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Posts posted by research boffin1
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The article is dreadful but the man is in the USA and in the USA they are light years ahead of the UK in all aspects of neuroscience and also all aspects of addressing people as individuals and tailoring learning and treatments to the individual instead of the other way round.
I understand him to be saying that ADD, ADHD, ASD,Dyslexia et al are the consequences of neurological differences not the condition itself. This is important because so much medicine is wrongly about treating the symptom not the cause. Sometimes the cause may not be curable - shrunken or twisted prefrontal cortex for example but the symptom can be improved by training different neural pathways to either work better or to work at all.
When people ask how can you tell that it is ADD or ADHD or whatever, it is really quite easy with the kind of brain scanning techniques now routinely used in USA.
Certainly it is true that each condition is a different constellation and our understanding of this is growing all the time.
The trouble is we are all too easily locked into the conventional wisdom - there is no cure for autism. But once it was believed that you could tell a murderer by what he looked like and that the earth was flat.
Science is making fantastic advances in ways that are going to make conventional medicine and psychiatry completely redundant and there is some hope that in a realtively short time some progress will be made with stem cell treatments that will quite literally grow and repair all parts of our body including the brain.
I understand the frustration that having to live with an ASD causes and the anger that meds and eds and SWs bring out in us all, but we must try to outwit them by our determination to demand as good as is available not by burying our heads in the sand.
We need a system to rebut articles like this one that simply give a half baked version of something and enable services to wriggle a little more to not do anything to help.And we need to articulate the need for universal standards in the treatment of disability not the fragmented and uneven services that are currently being delivered.
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The US removed mercury from paediatric vaccines years ago (pre-2000) and the world health organisation recommended that its use should be discontinued. However, the UK decided to go on using it until at least 2004 (after it was removed following the publication of a study - the Columbia paper funnily enough). I am very annoyed about it because the mercury serves no purpose in making the vaccine effective - it is merely a preservative and has to do with cost effectiveness alone. My oldest daughter had these vaccines because I didn't know anything about it at the time. We have decided not to let our youngest daughter have anything and neither child will have any vaccinations because I do not trust the government to do what is in the interests of our children.It doesn't take a scientist to figure out that no amount of mercury should ever be injected into a person, much less a tiny baby. Love of money is the root of all evil.
Actually they did NOT take it out that long ago if they had then there would be less autistic children now in the USA.
There was a conspiracy to carry on using Thimiserol until 2002 with the complicity of the Federal Drug Agency and with encouragement from the WHO. Smith Klein Beecham offered to do it a whole year earlier. Why? Because otherwise it would have looked like the USA was dumping Thimiserol ridden drugs on third world countries.
Meanwhile UK Gov and NHS continued to rubbish the idea and continued for even longer using it. Its dreadful.
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Well I was in the doctor's surgery with the poster about MMR and how safe the jab was and now I read this.
http://www.generationrescue.org/pdf/news/geier.pdf
which research pretty much confirms that a range of problems including but not only autism are influenced by the mercury in jabs.
Looks like they are more open minded across the pond or is it less oppressed by agents of the state.
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Sad to see so much distress and hope that the experience will not put people off asking for help or expressing their honest views.
Maybe we all need to remember that everyone can hold a view different from our own and that there is little that is "true" or "false". Much is our individual perception of a reality that is our unique life experience.
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Difficult one.
It is likely the seeing white and colours is hypersensitivity to light. Try rose tinted specs and it may improve. (Not a joke, read about it in Donna Williams "Like Colour to the Blind")
Ignore the stuff about schizophrenia the condition is no longer thought to exist but is the result of a range of minor overlaid neurological conditions.
It is possible that there is heightened audititory processing going on. We all take in background conversations and voices without knowing it or doing anything with it.maybe clearer if it was clear what the voices were saying.
Another possibility is that it is about loneliness. A number of children have imaginary friends with whom they have long deep and meaningful discussions. I had an imaginary dog when I was 3 and would mess up all the flower beds with my footprints as I would go to get it off the beds.
Is the child on any meds? They have some pretty odd results sometimes.
Is the description of hearing voices another way of describing the inner conversations of the mind?
Ken
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Hi Florrie,
If I did not know that what you say is true about the probs once a dx goes wrong and what has happened, I would think you were ill. These people are like robots without the capacity for thinking independently. One person reaches a conclusion wrongly and they all stick to the theme like it was superglued to their brain.
This is now three referrals out of area that have gone wrong for you. One might be considered unfortunate, two improbable but three is beyond any basic probability. Professors Baron-Cohen, Howlin and Murphy could all get to grips with your problem and I think that your local service is trying to cover its tail not help you as a patient. I know for a fact that 2 of these people had agreed to see you.
You must get independent legal advice as this appears to be a serious breach of your human rights and should not be tolerated. The local service is abusing your vulnerability for its own ends and should be held to account.
Good luck!
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I just found out my new gp who appeared to be supportive on the surface and agreed to refer me to asd expert for assessment for mental health probs, depression anxiety ocd and co morbidity problems, it is important to me to see somone who understands mental health probs in asds because last time I was struck off after suicide attempt and said that I didn't appear depressed,because i have a lack of facial eexpression, and obviously did not communicate appropriately as depressed and I don't trust that they know what they are doing at all. My son has just been assessed too but they took no relevant history at all, and did not have a clue about asd like his ocd and sensory probs which is what has driven him to take alcohol and drugs to self medicate.This referal has also now gone wrong like all the others and i suspected it would even though this expert agreed to see me and was shocked at stuff that has been said like asd people end up in prison that has been said twice once when my son was 8 and newly dx, and my new gp is trying to manipulate me back to the people who made my life hell, with there insults failure to dx despite being given all the info and finally being struck off
I know these referals are being deliberately blocked and they want me to go back to the people who insulted me and offended me and my ex partner says they are trying to take control of it,and will probaly dx me as delusional or worse no probs at all, I've seen this happen to my sister too with her son and I suspect from posts I've read here it is happening to others. and would like to know if others feel this is happening to them
There appears to be 2 groups of people from reading these threads those who get dx straight away no prob and those who it takes years and maybe never get dx at all, and their lives are made hell trying to get it recognised, because once one person says it isn't that they all follow suit, and just look at what the last person said no one contravenes what the last professional said this is more obvious if you are disagreeing with what the professional said and less if you don't, I have tried to deal with them positively but they are going out of there way to make my life hell, and refuse to listen to how asd affects me. I need to be able to cope so that I can best help my son and the reason things are so awful is because he wasn't dx and then not only not given appropriate help but the help that was put in place was dangerous and lacked any understanding so that he would have been better oof without dx and the same happened to me and i actually know what is needed, just some understanding of what probs are not prejudice and group psychotherapy and blame psychotherapy that made things worse and contributed to my suicide attempt as well as the fact that no one would listen to what my son's difficulties were
I've gone off on a tangent again and just deleted half of what i have written but I want to know if anyone else feels their referals are being blocked or what advice can be given about this is going on, it is doing harm to people, and if I tell them that off course they are going to say I am delusional, pychotic etc or worse I have no probs at all and just think I have that is about the level of there understanding and the awful thing is i think they probably really believe that rubbish.
Some of the stuff going on with children is truly dreadful but the understanding of it with adults in my experience is so shocking, and the arrogance and ignorance that is displayed is absolutely appalling, I have no doubt that none of them have mine or my son's best interests at heart, only their pay cheques and there
status.
I believe in my case they are being deliberately blocked I suspect by the pct to prevent any kind of legal action taking place as obviously i was dx privately and the nhs specialist put on my records no evidence of asd althougth he reached this conclusion in 1 minute and did no assessment, of course they didn't realise at that time that I knew what an assessment should comprise of , they must think we are all stupid.
My ex partner has asked me to post this to see if anyone suspects something similar is happening to them although i am sure that my case is quite unusual although I think children are being deliberately delayedin dx.
I don't think this is right at all, and would appreciate any comments, my ex partner has decided to take legal advice, I personally couldn't organise it, but he has seen enough and knew predicted the outcome of this one and even the reasons they would give this time, my worry is it will make things worse and Jake will be prevented from getting any support although that is already happening his assessment involved something that in my opinion iws 20 years out of date and took no history like his ocd and sensory problems which is what has contributed to him seef medicating with alcohol and drugs, and it is the lavck of understanding that he received that has led to this mess anyway, but no one is prepared to listen, if I tell them they will just turn it back on me.
In addition where I live asd is treated as a mental illness and whist it is true I have got some mental health probs aggravated by their lack of understanding.
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The United Nations recognised ASDs as a "handicap" in 1975
The European Union adopted a European Charter of Autism in 1996
The UK is signed up to both conventions.
ASDs are disabilities or handicaps. I like handicap because it says with the right help you can be do something as well as the next person like in golf.
Neurodiversity is not saying that people are not handicapped or disabled. It is saying we NTs should stop treating them as in some way second class citizens. In fact the biggest inhibitor to people with MH probs is the attitudes of other people towards people with MH probs. I see ASDs as having the same probs about other people's ideas of what ASds are.
Geek. Counts street light numbers. Collects bus tickets. Knows timetables off by heart. No No No.
Has some information processing and communication probs and heightened sensory perception. Has some extraordinary gifts in some areas of factual knowledge. Has difficulty organising things and expressing concepts.
Example 1 World expert obsessive nutritionist. Knows all about horses. Has an extraordinary gift for reading and can remember charts of information. Expert knowledge of neuroscience. Expert knowledge of learning difficulties. Cannot take a phone message. Terrified to make a phone call, answer door. Cannot follow conversation or conceptualise at basic level - but can link at higher level an array of apparently unconnected information.
Example 2 Professional standard skateboarder. Expert on Brazilian football. Expert at mixing drum and base music. Perfect pitch and ability to retain rythm through overlaid rythm - extremely rare. Gifted at logic.
Cannot follow conversation or conceptualise at basic level. High level of anxiety and depressed.
The claim for ND is that there is no such thing as NT, it is a con. And therefore to have treatments to make people NT is also a con.
But ASDs do need recognition that they function at their own personal best in a way that is not NT and to do this they need to have others accept that they have a handicap or disability that means they need the rest of society to give them help to be themselves both financially and in terms of how their role in and contribution to society is valued by those who are not themselves gifted in the ASD way.
And I include all ASDs not just the so called high functioning ones in this because there is a key measure of a society that is how it treats and values its least able members that determines whether society is civilised.
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Has anyone heard about or considered using biofeedback or audio visual integration therapy for the help the brain processing problems in asd, it is used quite widely in other countries particularly America for asd autism and brain injuries affecting processing as it help retrain the brain and helps with memory, attention impulsiveness and and depression, and other things.Yes. I've heard of it.
Here is a link for anyone interested
http://www.eegspectrum.com/Applications/Autism/EEGandAutism/
Might as well talk to a brick wall.
in General Discussion
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If 35% of GPS are not up the job 65% of them are. So why is it that I have so far seen 0%? How is it that only 25% of people with mental health problems get to see an "appropriate person" meaning that 75% of people with mental health probs do not get to see an appropriate person.
How is it that mental health is the "Cinderella of the NHS"
How is it that ASDs get to be classified in the area of mental health when it is primarily a communication and information processing disorder.
The answer is simple
DISCRIMINATION