I am getting so blooming frustrated!

Thanks everyone xxx

MO4B,

The health professionals have identified hyperacusis and are dealing with that properly. There is no way that that was due to parenting issues. The Social Communication course is similar. Social Communication is a fundamental problem suffered by people with autistic sprectrum disorders. It is not related to parenting skills - it is just the way we are. All sufferers on this forum have social communication problems and we all need extra help to deal with the rest of the world to avoid getting into fights or becoming a recluse.

I am happy to recognise that I have autistic traits that exist alongside my non-autistic traits. In some situations I do autistic things and on other occasions no one would notice that I am autistic. I don't mind thinking of myself as having autism because I know that it gives me some specific problems but I know that it doesn't entirely define me and I have managed without the label for most of my life. Looking back I can see that I have always been this way and that I would have benefited from some specific assistance with some issues on various occasions back to primary school.

I am also a parent of two boys. I wish that I had known about my autism earlier because I would change some of the things I did as a parent. I don't think that my parenting skills were always brilliant. I wasn't a great listner and I also let them negotiate their way into doing things that I should have put a stop to. I think autistic people can make good parents but, like 99% of all parents, I think we can all learn a trick or two to be better parents.With autistic children the job is harder and there are more specific things that you can do as a parent to help him. Some of these things are not obvious and I think you should allow people to help and make suggestions.

The main message I want to give however is that IT IS NOT YOUR FAULT! people may have made remarks in the past about parenting skills but autism does not come from bad parenting skills, the health professionals are not suggesting this when they send you on a social communication course.

It's back to the problem of definition (on another thread). Autism tends to be in a category of its own, falling between mental health services and learning disability services, neither of which strictly apply, though you might have one or the other co-morbid.

For the same reason there are no unambiguous ways of referring to it. Autism traits or tendancies probably reflects a health professional being cautious about the label "autism" which still tends to mean, in many people's minds, children curled up in a corner unable to communicate and unable to cope with their environment.

I have noticed, if you say you have an autism diagnosis, or aspergers, some health professionals seem to have a mental block..... as if this can only mean you are in care in an institution, on medication, unable to do anything for yourself. They don't seem to recognise "walking wounded".  Maybe autism traits is the term for walking wounded.

On expresso coffee machines, yes they are loud. I've said before, and it may be just my mildness allows it (I'm not suggesting other people should) but I tend to expose myself to sound to work out what affects me.

Therefore I will go to some cafes just to experience the noise. Where I used to live there was a realistic italian cafe, opposite one of the chains that claims to be real. Only you could smell the coffee. And it was in a tiny room with cramped tables. The coffee machine was harshly and abrasively noisy and the guy that ran it seemed to make a habit of crashing the crockery. And there was italian music playing. And people talking -so many overlapping yet distinguishable conversations. Amazing layers of sound. Yes it hurt, quite often enough to want to get out quickly. But it was worth just staying put and enduring to prove I could cope.

Where I am now I'm spoilt for choice for cafes but they are all roomy. I cannot sit so close to the machine. But I still like exploring noisy places.

Club music is different. I don't like loud, but if I have to go where the music is loud, I prefer it to dominate all else, in other words I cannot hear people talking...just one predictable sound world. And if I can pick out the base rhythm vibrating through my feet or my chair all the better.

What I have trouble with, invariably, is railway stations.

When my son was being diagnosed in the late 1980s, 1 of the professionals wanted to use the term "autistic tendencies".  I see this as a similar phrase to "autistic traits".  I think she thought it would be less final if she used the tendency phrase instead of saying, bluntly, that he was autistic.  I persevered + asked her was he or wasn't he autistic?  She said he was, so I said then that's what the diagnosis shd say.

The way i see it,as i have read up is everyone has autistic traits,so does that then mean they think nothing is wrong? the salt sent us on the socail communication course,god i know this sounds so daft,i just want someone to tell me its not us if you know what i mean,the audiologist said the other day its just a label and yes it is but i want someone to say its not our parenting he actually has a problem,where as for the last five years weve been going round the houses. does that make sense?

MO4B,

It sounds as though they are taking his autism quite seriously if you are going on a social communication course for two weeks with him. It sounds as though he is well and truly "in the system" if he is getting the audiology and everything else.

When they say that he has "autistic traits" they are, perhaps, saying that is showing classic signs of autistic spectrum problems. It may be you are thinking of this as that he only has traces or slight issues when they have understood that he has problems that need to be given special assistance. I had to look up the definition of trait, as I wasn't clear on what it means exactly, and google came up with "a distinguishing quality or characteristic" whereas in everyday usage we might think of a trait as a small part of someones character.

This is another thing that I have identified in myself and, since diagnosis, have linked it to the sensory issues that a lot of people with ASD complain about.

My first problem arose a few years ago when I found that I was unable to cope with the sound of espresso machines in cafes. It seemed as though the noise was deafening and unbearable. I thought that this was simply related to the increasing numbers of such machines as they became more popular. I now believe that it might be related to my ASD/brain wiring. That sensitivity has now largely subsisded but I now get frequent tinnitus but not to the extent where it really gets in the way of everyday life.

I've never managed at all well in noisy pubs or clubs and I think this is common in people with ASD from what I've read on the forum over the last year. I don't have to go to such places so it isn't much of an issue for me.

I do use noise cancelling headphones (to listen to music on my phone) when I'm at work as I seem to pick up nearby conversations and noise to the point where my concentration can be destroyed. The NC phones do a good enough job to tip the balance enough to let me get on with work.

But is the hyperacusis co-morbid with autism and therefore treatable separately (independent of any autism considerations)?

Or is hyperacusis similar to hypersensitivity to sound in autism, and therefore may have different causes and require different treatments?

It is reassuring that the audiologist mentioned an overlap with autism. But the audologist is proposing a treatment that introduces background noises to de-sensitize your child. De-sensitizing treatments aren't usually used in autism.

Also the NAS website doesn't seem to know about hyperacusis. That is worrying because that needs to be known, and fully understood, that de-sensitisation is an appropriate treatment.

If NAS doesn't know, NAS needs to get to know pretty fast.

Thanks crystal xx

Longman it was the audiologist that told me hypercusiss was in a lot of children with autism.

Since posting this I've looked up a number of autism books (including ones on the science behind autism and hypersensitivity) and they don't mention hyperacusis

I looked it up on the front page search function and got glossary H nothing said. However I tried the research on Autism link (under advanced search) and that came up as link broken (is NAS aware it doesn't link?).

I tried Autism Data and that came up with 16 academic papers, back to 1995 but a number 2012-2014, but no explanation offered other than to look these up. Hyperacusis wasn't in the article titles.

If NAS really doesn't know about hyperacusis directly, why are people on the autistic spectrum being treated in this way?

I am concerned that a treatment for a non-autistic condition has claimed it also cures autism. For that there needs to be proper back up.

Do you mean "hyperacusis"?  This is something that puzzles me - it is diagnosed and treated as a condition in its own right, yet is matches something that many people on the autistic spectrum experience.

It does make me wonder if, for some reason (and there seem to be a few of these around) they are trying to avoid diagnosing autism.

I looked it up on NHS choices and there is just ONE mention of autism "is particularly common in children with Williams Syndrome, autistic specterum disorder, and tinnitis". So do those of us now diagnosed with autism really have hyperacusis? Here are some quotations from the NHS Choices webpage:

"An extreme aversion and hypersensitivity to sounds that are generally not an issue to others"

"As a result people with hyperacusis may avoid noisy situations and become socially isolated"

"Children with hyperacusis may struggle at school, where background noise can make it difficult for them to concentrate, thereby affecting their achievement".

It is treated by CBT and a noise generator that works through a hearing aid that gradually acclimatises the sufferer to noise.

BUT is this appropriate fot patients with autism? As I say autism is only mentioned once.

I can see why the indistinction arises - hypersensitivity to sound is not in the Triad of Impairments (NAS's bible for understanding autism).

There is a reason why it is excluded. Hearing sounds other people cannot hear might be confused with schozophrenia. And the triad of impairments was designed as a diagnostic tool to distinguish autism from other conditions, including schizophrenia. Sensitivity to noise (whether hypo or hyper) is usually mentioned as an add on symptom, without adequate explanation...or several pages away, as on the NAS website.

So (NAS Moderators please pay attention) is the relationship between hyperacusis and autism being overlooked. Are people with autism (or autistic traits) being treated inappropriately by what amounts to aversion therapy?

I think it is time we knew.

It's frustrating + depressing, having to battle on for ages just to get what you shd be given.  Sorry, but you must persevere, for your son's sake + for yours.  If you give up now you'll have to start again at a later date.  Just keep pushing until you get the correct diagnosis.  There really isn't any other way when you're treated like this.  So I do understand your frustration but don't let them dictate to you + your son.