Here some suggested organisations that offer expert advice on SN.
dolfrog, can I ask you a question(3 Posts)
Yours is a name I have noticed a lot on here, but not one im familuar with, if that makes sense.
Are you a parent or a proffessional?
Im just nosey really
I am a parent of three children all of whom have a clinical diagnosis of Auditory Processing Disorder APD.
Our DS1 was summarily diagnosed as having APD after years you doing down a failed dyslexia and possible ASD route.
To get the help understanding he needed, I had research APD via the internet as the only sources of information regarding APD were in the USA. The research sources i found became part of my first web sites, the only remaining one is
Living with an Invisible Disability from that time.
While doing this research to help our DS it became quickly apparent that i also have APD, and had lived with all of my life, and I could see that previous generations of my family had also had these types of issues. In 2000 I start the first Adult APD forum at Yahoo the OldAPDs which currently has 600+ members. And also during 2000 I began to find UK research and clinical professionals with an interest in APD. In 2001 I had a meeting with the UK leading APD professional of the day, and he explained that in order for the Medical Research Council (MRC) to gain government funding to research APD, there would have to be a parent based support organisation to monitor, and work with the MRC regarding APD. And in 2002 I founded Auditory Processing Disorder in the UK (APDUK) together with other UK parents of APD children
I created the APDUK web site which is designed to be APD friendly with domonstrating how those who have APD prefer text tot be presented in consultation with other adults who have APD.
In 2003 I was one of the first adults in the UK to be clinically diagnosed as having APD,
In 2004 the Medical Research Councils Institute of Hearing Research gained £12 million for a 5 year APD research program, and their first priority was develop a new universal battery of APD diagnostic tests, based on sound frequencies to replace the old USA language based tests. The first MRC APD pamphlet was published in 2004 and published in consultation with APDUK, and the pamphlet also linked to APDUK as the source of support information, which back then was me.
For some years now I have run the APDUK telephone helpline, which for most of that time has been me talking to all who ask for advice etc regarding APD and related issues.
I have been liaising with the various MRC and APD researchers, leading APD hospital clinicians ever since.
My DW was diagnosed as having APD 2 years ago so we now have a complete set, all the family have a clinical diagnosis of APD.
And if you really want to be nosey you could put my internet name, dolfrog, into Google and trace my internet history over the last 12 years.
To take on the educational professionals and other groups who would prefer that APD did not exist, I have had to resort to carrying out in depth research via research papers, (something pre 2004 I never knew i could do) so that I could demonstrate that APD existed and to disprove much of the hype they use to try to dismiss APD as the latest USA fad.
The MRC APD pamphlet stated that 10% of children have some degree of APD, so the question has always been where are they, have thye been recognised as having some form of difficulty or have they been miss diangosed, as my DS1 was almost miss diagnosed as being ASD. In the USA many who have APD have been miss diagnosed as having ADD or as it is now known ADHD, and many only the diagnosis of a man made disability dyslexia, which should lead to further assessments for the underlying cognitive causes of the dyslexic symptom.
Over the years parents have asked me to research some of the issues which may result in acquiring APD such as Downs Syndrome and Transient Ischaemic Attack (TIA) which are not obvious issues that related to APD.
So I am a parent who has had to acquire a great deal of information to increase the awareness of APD, while working with research professionals, and clinical professionals. This can be limiting as I am not always able to express all of my own views as i still have represent APDUK, and be aware of the current research understanding of APD and the many related issues. Which was not really my intention back in 2000 lol.
So unlike many on MumsNet, it is quite easy to find out who I am, and I am not about to become involved with name changing.
I you have any more questions just ask, but for obvious reasons there may be some personal issues i will not discuss on a forum.
It was just that you seemed to have a lot of knowledge and linking alot of websites and a slightly proffessional style of posting, and I have been here years and thought you were fairly new, but didnt know anything about you.
Thanks for the information there, it looks intresting. DD1 has a dx of APD alongside the autism and DD2 has SPD alongside her autism.
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