So tired and so down

Hi my names sharon i have a little boy that i belive has hfa and sensory difficulties,hes been under the pead since around the age of 2 for what i belived was tummy troubles,it wasnt he was self stimulating,he was also reffered to salt.

I feel tired of battling to try and get him a diagnoses,the first pead we had was utterly useless,we would be in and out within 5 mins,not being taken seriously.

When he was a baby he hated being picked up and cied a lot,soon as he could stand he would jump up and down and flap his hands,he still does this now.

All the way round supermarkets as a baby he would have a high pitched scream,people would move far away to get away from us.

When he was walking (toddlerish) he would throw himself on the floo outside certain shops and refuse to move,or throw himself on the ground in the middle of a road.

He has no sense of danger,hes run out into the roads a few times,we have to have tight grip of his hands now.

His speech was really repetitive,even if you fed it back to him he would ask the same question time and time again.

For years we have had to avoid toilets outside hes petrified of hand dryers and was of the hoover but hes not so bad now.

In nursery they got ed pych in she said to put him on school action plus immediately and form a caf,the nursery is attached to the school he wouldnt go in the hall and missed out on graduation cermony because they felt it wouldnt be good for him,he missed out on a few things because of the noise.

Anyway he started school they got another ed pych in and he pushed for an ados test, he had the test and nothing came from it apart from my son spoke in a monotone voice.

In year one they gave my son a visual timetable,but then took it off him again because he got obbsessed with it,they also given him a list of who was on playground duty and sent it home with him.

He always asked if it was going to rain on a schoolday as he hated wet play and absolutely every thursday without a shadow of a doubt felt ill because it was pe.

He takes most things very literally, dad said  "dont run on ahead" son says "im not running on anyones head".

He is blunt to the point it is often cringeworthy! ive had many times where i have wanted the ground to open up and swallow me.

The there is the agression and the huge meltdowns which we have had all the way through.

We now have a new pead and have been to cahms and they put me on a course for parents of children who have asd/traits.

I always doubt myself i always think is it us? are we bad parents? is there nothing wrong? are we making too much of it? is it? isnt it?

Today i feel drained,this week i finished the course for parents of children with asd/traits and i cried my heart out, i think through sheer tiredness.

Does my son sound like he could be on the spectum? am i making too much of it?

Parents
  • I saw a request from mumof4boys772 for me to look on this thread, hence my sudden appearance in this discussion.

    My constant plea, frequently addressed to NAS (Moderators pay attention! LOL), is for sensory issues to be taken into account.

    The problem is the diagnostic Triad of Impairments, designed to distinguish autism from other conditions, is then used irresponsibly to define autism. Sensory issues are at best mentioned as an aside. NAS is particularly guilty of this on their website, which they promote to health workers and other support professionals, and use as the basis of training packages.

    So health workers and schools support only really know about the triad - communication - socialisation - obsessions. They don't know about the sensory issues. Hence the treatment for sensory sensitivity and meltdowns is medication that may in some cases be inappropriate, rather than adequate understanding of the causes.

    Many professionals still think reactions to sensory overload are just bad behaviour. 'Pull yourself together' is about all they can come up with. Or diagnosing "immaturity problems".

    We really have a fight on our hands to get sensory issues taken seriously, and NUMBER ONE obstacle to this is NAS. Hence my objections regarding the latest NAS Campaign - which is telling the Government about difficulties faced by people on the spectrum, which NAS doesn't include in its website and training pack explanations of autism! The right hand of NAS doesn't know what the left hand is doing, no joined up thinking (there's a few metaphors to puzzle over).

    Sensory issues are hugely important. But nothing will be done while NAS and the professionals continue to ignore it.

    As I explained yesterday on another thread, besides undue sensitivity to noise levels, sounds that hurt because of their frequency or modulation characteristics, or in certain wavelengths, and the unpredictability of sounds and sound patterns. There has been no research done on this. Yet this is obvious stuff, that can be explained and measured scientifically - maybe just too advanced for the self important experts.

    Hence hand driers, hoovers, certain electromagnetic sounds, with certain frequency/modulation characteristics, or unpredictable start and stop are problemmatic, but computer sound feedback is OK.  

    Hence supermarkets and crowded shopping malls are scary, invasive and unpredictable. Games arcades, an example mumof4boys772 used yesterday, appear safe because the sounds are familiar, consistent and predictable, and people are mostly static rather than milling around.

    Until we get sensory issues taken seriously, thousands of people on the spectrum, and their families will continue to suffer, perhaps needlessly, because of the callous indifference of toffy-nosed know-it-all professionals who don't want to be pushed outside THEIR comfort zones!

Reply
  • I saw a request from mumof4boys772 for me to look on this thread, hence my sudden appearance in this discussion.

    My constant plea, frequently addressed to NAS (Moderators pay attention! LOL), is for sensory issues to be taken into account.

    The problem is the diagnostic Triad of Impairments, designed to distinguish autism from other conditions, is then used irresponsibly to define autism. Sensory issues are at best mentioned as an aside. NAS is particularly guilty of this on their website, which they promote to health workers and other support professionals, and use as the basis of training packages.

    So health workers and schools support only really know about the triad - communication - socialisation - obsessions. They don't know about the sensory issues. Hence the treatment for sensory sensitivity and meltdowns is medication that may in some cases be inappropriate, rather than adequate understanding of the causes.

    Many professionals still think reactions to sensory overload are just bad behaviour. 'Pull yourself together' is about all they can come up with. Or diagnosing "immaturity problems".

    We really have a fight on our hands to get sensory issues taken seriously, and NUMBER ONE obstacle to this is NAS. Hence my objections regarding the latest NAS Campaign - which is telling the Government about difficulties faced by people on the spectrum, which NAS doesn't include in its website and training pack explanations of autism! The right hand of NAS doesn't know what the left hand is doing, no joined up thinking (there's a few metaphors to puzzle over).

    Sensory issues are hugely important. But nothing will be done while NAS and the professionals continue to ignore it.

    As I explained yesterday on another thread, besides undue sensitivity to noise levels, sounds that hurt because of their frequency or modulation characteristics, or in certain wavelengths, and the unpredictability of sounds and sound patterns. There has been no research done on this. Yet this is obvious stuff, that can be explained and measured scientifically - maybe just too advanced for the self important experts.

    Hence hand driers, hoovers, certain electromagnetic sounds, with certain frequency/modulation characteristics, or unpredictable start and stop are problemmatic, but computer sound feedback is OK.  

    Hence supermarkets and crowded shopping malls are scary, invasive and unpredictable. Games arcades, an example mumof4boys772 used yesterday, appear safe because the sounds are familiar, consistent and predictable, and people are mostly static rather than milling around.

    Until we get sensory issues taken seriously, thousands of people on the spectrum, and their families will continue to suffer, perhaps needlessly, because of the callous indifference of toffy-nosed know-it-all professionals who don't want to be pushed outside THEIR comfort zones!

Children
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