Dyspraxic speech

[Susan69]

I have always had problems getting words out since childhood. I remember overhearing someone talking about my speech problems once when I was older and it stuck with me, they explained to the other person "you know when you take a breath and then speak? ... well Susan tries to speak on the in AND out breath and that's why she can't control her pitch and intonation" (this was in the 80's and the person talking had experience of deaf children/adults speech but doubt they knew what was dyspraxia was as they weren't a SLT)

I wondered is this how you would explain what dyspraxic speech sounds like?

I always knew what I wanted to say but really struggled to get the actual sounds out to make up the words and sometimes would have to try and think on the spot of another word to use if I realised I wasn't going to be able to get the word out at all. Due to the problems processing speech as well I was diagnosed as 'hearing loss from hypothyroidism". Having Tinnitus also confused things sometimes as one sound I heard sounded like the heating firing up so I'd go and check and it wouldn't be on it was my Tinnitus! (other sounds are like a constant fridge hum or a steam train running through my head or like the waves (like when you listen to a shell)..usually at night when I put my head on the pillow and am laying down.

I can see how I was misdiagnosed as deaf as I didn't have the language to explain or contradict them at that age as I was also autistic and frequently lost in my own world and not responsive to what was going on in the environment anyway. I usually had hearing aids either blocked and turned off to block out sound or had a walkman on using the T setting on the hearing aids they made me wear (cos they thought I was deaf)

I remember when I did have my assessment for autism the psychologist seemed so interested in my speech that she asked if she could record it, but I don't remember her ever explaining why she thought I had the speech problems. (unless she had asked my dad and he had told it was because of my thyroid/late development/late to learn to talk etc).

[Tom fod]

I'm afraid it is all a bit of a complicated maze since Dyspraxia is a condition that seems to present differently in each person affected. Certainly difficulties with pitch and intonation are a recognised problem associated with Dyspraxia and some people receive a specific diagnosis of Verbal Dyspraxia. Others struggle with auditory processing acting accordingly to what they hear (or think they hear) or they immediately forget what they heard due to issues with working memory.

This however does not necessarily take into account lack of confidence and/or stress, which can also cause us to mispronounce or jumble our words or forget entirely the words we meant to say to somebody about something. Additionally many people don't just have dyspraxia but also other related or unrelated conditions that cause us difficulty when trying to carry out some (or many) 'normal' day-to-day activities.

The Dyspraxia Foundation started in 1988 which I think was around the time I was Statemented for Special Educational Need. I cannot ever recall being told I had Dyspraxia I only learned some 20 years later.

[Susan69]

yes I realise it's going to be no easy task as its a developmental delay and I'm now heading for 50. I have always had difficulties with balance/co-ordination issues and social skills. I didn't realise that social difficulties were also a part of dyspraxia on its own (ie without having autism seperately) and wonder how they distinguish between a persons social difficulty been due just to have dyspraxia or because they have autism too on top?

I think what has happened with me is my childhood symptoms originally improved with extensive physio and thyroid treatment though I never mastered swimming and was never able to learn to drive a car (tried at 2 different points of my life over 10 years apart, even with some adaptions).

In my 30's I'm not sure what happened but even despite me still taking my medication my body seemed to be shutting down (My dad had just died a few months ago I'm unsure whether there's a connection there) I woke up one day barely able to move and was taken to a GP who immediately arranged for me to be admitted to hospital (they thought I had MS at the time) They continued to look for 'something new that had come on suddenly' ie a condition I hadn't had in the past, I have made extensive notes of my past symptoms since and since I reached a different level of awareness as I aged and was able to understand more to do more complex research I have come to realise there is a pattern.

I believe something triggered my thyroid to shut down (don't know if emotional shock/stress etc can do this) and this caused acute symptoms of an under active thyroid. (I was also frozen laid under a duvet in august while others were walking round in vests and shorts!) and having intermittant vision problems at the time too, along with severe back pain. I believe they were the sign my body wasn't converting enough thyroxine but I believe the balance problems that can be caused by an under active thyroid were made to appear worse by the fact I had underlying dyspraxia (undiagnosed) this made this symptoms seem really severe causing me to really struggle to walk and keep my balance (the pain levels wasn't helping either!)

As this happened at a stage when I hadn't been out of an autism unit for very long (been living independently less than a year at that point) I was not at a point emotionally or intellectually (hadn't discovered the internet and looking things up at that stage) I was not able to verbalise well what I felt was happening to me. I felt panicked not understanding why I was struggling to walk so much and the Dr's and specialists assumed this must be because it was something I'd never experienced before so were looking along the lines of MS and conditions that start in adulthood causing a genuine misdiagnosis of the only thing they believed it could be that could be caused by my thyroid shutting down. (they believed Cerebellar Ataxia however no lesions were found in the MRI scan and my condition has never progressed where I'm unable to do anything myself and I'm still living independently).

I need a scooter/wheelchair for distance as also have circulation issues (and a leg that swells, very flat feet that get very painful on attempting to walk too far) but can walk around my house. I have some walking aids as my balance on uneven surfaces even for short distances outside (like car to house etc) isn't good. I can feed myself and cook for myself etc but am messy and struggle to organise my house. I have always had these issues to some degree though didn't need a walking aid until my 30's after that incident with my mobility suddenly going.

If I wouldn't get a firm diagnosis then should I not bother informing benefits people there was possibly a misdiagnosis 15 yrs ago .. if a dyspraxia specialist would only be able to say 'it sounds like you probably had it/have it and was misdiagnosed'? I've read Dyspraxia, Ataxia and Apraxia can be very difficult to diagnose and can often get confused. As I still basically have the same issues on a daily basis - balance and co-ordination issues, pain, autism and under active thyroid, communication difficulties (just due to the autism rather than hearing loss) is it worth risking having my money cut if a dyspraxia specialist wouldn't be able to confirm it now either way anyway at my age?