Published on 12, July, 2020
I have asked my GP surgery to give me access to my NHS medical records back to childhood. This is an attempt to find something from them which will prove to be the 'hard' documentary evidence of early autism that my autism assessor is demanding from me.
Despite the obstructive attitude of the GP's Receptionist I managed to fill in a form at the GP surgery, and was told it would be sent on to their main branch for processing. I won't be able to follow it up until tomorrow so I am still waiting....
My questions are:
How long does this usually take in reality (ie: to actually get to see the records)?
Will I need some sort of reference book to decode the medical jargon in the records, and if so what can I use? Or is it written in plain English?
What kind of thing will I be looking for with relevance to autism?
Do NHS autism assessors already look at your full health records? My assessor previously told me she'd seen my care records, but during out first assessment meeting I could tell she didn't know all about my medical conditions at all, (or did she?)
Would be grateful for any insight of previous experience with this, especially with regard to what is relevant to signs of autism.
Thanks.
I also have the note TS. This may indicate a floppy heart valve (tricuspud stenosis)
All these together look a lot like Fragile X Syndrome the most common genetic cause of autism
https://health.ucdavis.edu/welcome/features/2012-2013/08/20120822_fragile-X.html
MY WORK HERE IS DONE
I also had my adenoids and tonsils removed. And I still continued to get ear infections like you. I don't think its a coincidence. When my autism assessor heard about my recurring ear infections she was definitely paying close attention.
This is fascinating Esmeralda as I always suffered with ear problems aswell as a child. Perforated eardrums fluid coming out and I remember the pain was excruciating as a child also. Had my adenoids removed at age 6 because they thought this was one of the reasons for constant ear infections and I remember my mum telling me they said they were abnormally big pushing against tubes. Never stopped me getting more ear infections though and still suffered right upto secondary school.
I find it amazing you found this information as I am diagnosed ASC and also suffered with my ears bit of a coincidence.
Yes! Head first! You?
Struck gold again from the medical records
2.4.73 diagnosis chronic serious otitis media
1973 bilateral myringotomty
1974 bilateral myringotomty
(This is a minor procedure making a tiny incision in each eardrum to release fluid.)
Upon Googling 'autism earache' I discover:
"Children with Austism Spectrum Disorders (ASD) are twice as likely to experience complications from ear infections, according to a new study published online in the Journal of Autism Developmental Disorders, “Otitis Media and Related Complications Among Children with Autism Spectrum Disorders,” Jan. 6, 2016. Uniformed Services University"
"The frequency of ear infections, ear tube drainage, and deafness was examined through parental reports in autistic and yoke-matched, normal children. For the autistic group these difficulties were additionally examined as a function of the children's cognitive and communication abilities, verbal versus nonverbal status, sex, and degree of autistic symptomatology. Autistic children had a greater incidence of ear infections than matched normal peers. Lower-functioning children had an earlier onset of ear infections than their higher-functioning autistic peers. Ear infections coexisted with low-set ears, and with a higher autistic symptomatology score. The findings are discussed in terms of greater CNS vulnerability in the autistic children, which is likely present since embryogenesis. The possible adverse consequences of intermittent hearing loss on language, cognitive, and socioaffective development are considered. 1987 NCBI"
The word 'deafness' is used in my notes but I just don't remember ever having lost my hearing even temporarily.
This along with the accident from spinning in circles I considered earlier today are actually what I have been looking for. I think it would be worth completing the set by finding the notes from birth to18 months as well.
I am a proper genius
Did you ever do the going down the stairs on your belly?
I still do upside down on the sofa now, lol
Sorry I have a bad tendency to use technical jargon! Good old Google :-)
Googled proprioperception. Very very interesting. All helps with the balance.
It's interesting how a lot of things that I did as a child, I can now see were types of stimming. I used to love climbing and was the only child in my class to be able scale the ropes in the hall when I was at primary school, I've got good dexterity in my feet which allowed me to use my feet to grip as well as my hands so I was very quick too. Trees were also good! I also did Gymnastics for years and would spend my evenings practicing Gymnastics for hours. I now realise though, that all that climbing and stretching is another type of stimming, the stretching through climbing or doing gymnastic moves gives proprioperception feedback!
I spent half my childhood upside down as well.
Quite a lot of the things kids do actually translate into yoga moves like the 'downward dog', which is really interesting because I love doing yoga. It's such a natural way to feel good .
I used to enjoy it when my dad spun me around by my arms and I also used to spend ages hanging upside down from my swing frame when I was a child, my 2 year old has been doing 'head inversions' (down face dog) since before she was 1. She's now progressed to doing headstands for lengthy periods of time, I keep finding her 'being a bat' in her cot or up against the front room stair gate. It's to get the head rush effect, another type of stim.
I was watching the washing machine just the other day. Didn't realise until my partner spoke to me and I jumped as I had been in a trance of sorts.
Most kids like to spin and watch spinning things like windmills to some extent, that's true. So how much counts as autistic I am not sure.
Yes most definitely. Just request to your GP. You must go in person to the practise with ID. You fill in a form and they get back to you with your requested notes. There might be charge for a request that has absolutely loads of work to do, but I can say mine were free.
I found out off my relative that knew me in childhood that instead of watching TV I would sit and watch a full spin cycle of the washing machine! Haha I'm sorry but if my son or daughter was doing that I would of been thinking something was wrong.
On the other hand years and years ago not many people had heard of Autism.
To be honest I too remember when as a child spinning around looking at the floor then falling over but I thought this was normal?
Can people now access their medical records for free?
From that article
"Swinging the child within a soft blanket filled with pillows or lying with the head inverted slightly may also inhibit arousal level "
Oh my God! My parents used to swing me in a bed sheet like a hammock.
And I would hang upside down off the sofa.
Too weird!
Now was this to help my earache, or did they know something else?
Wow. Medical notes say I had fluid drained from my ears twice. So I was effectively shaking it? Ewwww....
Vestibular stimulation in the context of spinning is basically when you shake around the fluid in the middle ear because you enjoy the sensation.
This is the more sciencey version:
https://www.sciencedirect.com/topics/medicine-and-dentistry/vestibular-stimulation
The world looks so much better when the horizon is in motion don't you think? I did like the playground to a dangerous extent. I used to do a similar thing with my head to your daughter as well. Must Google 'vestibular'