Is there any point getting tested for Autism / Aspergers?

[phoenix11]

I'll add in support of plym's post.

 

There are still GPs out there who refuse to even acknowledge the condition straight up. Those who do understand it as a condition in it's own right are still dismissive of outcomes.

 

Getting a formal diagnosis can take a long time and of course, it costs money, which no-one wants to spend when they cannot "see" any kind of benefit.

 

eg - break leg, go to hospital, x-rayed, leg in plaster, leg fixed. That's fine - visible benefit.

 

Compare this with the all too common perception of: Suspect AS, not sure where to send, maybe local CMHT, get formal diagnosis, now what?

 

The GPs are getting all too keen to stress, with all manner of conditions and health problems, not just mental, that if in their opinion there is not much of a benefit, then they don't think it's worth it.

 

Ehh??? They dont' think IT is worth it? That 'IT' is you, the patient.

 

However, the first diagnosis does not have to cost much at all, or be a lengthy process. That's the formal clinical diagnosis.

 

A person can be diagnosed by a competent psychiatrist or a psychologist trained to diagnose AS. That in itself is enough for a person to get doors to open and insist on appropriate support.

 

There is a lot that can be offered to people with Asperger's. not in the least by getting a basic diagnosis, they can then start to understand what are triggers and why. It is NOT a 'bad' personality issue which is how the condition is often written off by others. But AS can affect people's personalities especially when they have no idea why they feel 'out of step' with everyone else.

 

The later the diagnosis, the longer someone will have been struggling to cope and often developing coping mechanisms which are not necessarily the best.

 

Depression can be another big factor for Aspies - but just treating the depression with anti-depressants is not the way forward without some kind of diagnosis and understanding of the condition.

 

The National Autistic society are only too happy to provide supporting information - much of it is free, much is available on their website although if you can't find it, their help service is really great.

 

So, although it is not always easy by any means, I would always say get your condition diagnosed, accepted and then insist on being treated with the correct support and help that you need.

 

Everyone is different - not everyone wants or needs the same, and it's always up to you if you want to disclose you have AS.

[Nystagmite]

Thank you I'm getting it done via NHS: so no cost for me, thankfully.

[caro]

Can't add a lot to this, but just thought I'd mention a conversation that I had with an educational psychologist I know. Obviously he works with children so this specifically related to them, but in his opinion there is too much emphasis on putting labels on children, whether Aspergers, autism, ADHD, ADD etc, but the important thing is to deal with the symptoms and problems, not give them a label to explain them away. By doing that there can become an expectation that the children will behave in certain ways which may not necessarily be the case. You need to look at each individual as they are and treat them accordingly.

[my-spirit-soars-free]

There is no test for Autism, any more than there is for depression - so if you all want is to know, then I would say that if you are asking the question, you already know who you are.

 

If you need the label to claim the protection of the Equalities act, then it is worth going for an official diagnosis. If you are in a high powered career, and worry about discrimination - then not getting the label is probably the right answer.

 

The only thing I would say is that you can always change your mind from deciding "not". You can't get rid of the "label" once you have it - so if you are not sure, then see how you feel in a few months time?

[parenting4specialneeds]

Hi there, it is a very personal decision. How would you feel if you were diagnosed and it was positive? Its possible you don't have a form of autism but have other issues. Take the first step and let the professionals assess you, what you do will be up to you after that. It may give you a sense of closure and at least then you will know where exactly to look for information instead of just speculating.

[Nystagmite]

Update:

 

Had an appointment with the psychiatrist this morning and had mum present. He confirmed that yes I am Autistic; but isn't sure where on the spectrum I am. He's now going to send me a letter regarding the outcome of today. He did advise me to look on NAS for a local support group too.

[Heidi Rees]

Hi really glad you got the confirmation you needed! Some people don't realise the relief you can get by just being told yes there is a problem and your not just loopy! It's not about the benefits etc you could receive - I have an autistic 7 year old and I knew there was an issue for years before anyone took notice, he ended up in an assessment unit when he was 3 and a half and was diagnosed at 4 purely because I had a meltdown infront of a temp health visitor (mine was off sick) and told her I couldn't cope anymore nothing I did was working and explained all the things he did. She referred him the next day and the educational psychologist told me after 20 mins with him what I knew deep down, he had autism, but would need tests for how severe! He is high functioning so is really intelligent which his pre school had never picked up on (they used to stick him in front of a dvd as soon as he got there) and learnt the alphabet in one day! Now my 4 year old is a totally different story - he decided at 2 sleep wasn't for him and he is literally bouncing off the walls (lucky the school know me as he is covered in bruises) he cannot concentrate or WALK if he walks it is either hopping or skipping or with his toes turned backwards under him (you've got to see it to believe it) and we say he should have a spot in the tv programme destroyed in seconds as we have had to move house so he has his own room after he managed to topple a chest of drawers with a big tv on whilst climbing and he destroys everything he comes into contact with, he climbs everything from kitchen units to windowsills (to swing off curtains) and we firmly believe he is ferral!! He has had an assessment for autism and it has come back negative he hasn't got the usual eye contact and social issues as the 7 year old and when speaking to the educational psychologist it looks far more likely to be adhd but the school cannot diagnos adhd and our gp refuses to refer without confirmation from the school so we are stuck in limbo! And getting back to my point it is far easier when out and about with the eldest as when people verbally abuse me - which many do as I have been deemed an unfit teenage mother who shouldn't have had kids I don't discipline (told to me by a complete stranger with no kids in tesco when I was 25 and my son had a meltdown when they spoke on the tannoy) as I can say don't be so ignorant he has autism and people leave you be, but with the 4 year old there is no explanation I can give as he has no formal diagnosis and it really does look like bad parenting when your 4 year old is running up and down aisles and climbing into other peoples trollies!!

[Nystagmite]

My older brother is also Autistic. For years, (from at least the age of 4) mum knew there was a problem and that he wasn't just being naughty. There were a few incidents where he would do something and when asked why, he would say that someone (who he could only see) told him to do it. At one point, they were questioning schizophrenia! It took 10 years for someone to listen and for him to be diagnosed and for the doctors to stop suggesting that it was the parents.

 

I am completely different to my brother. He doesn't have issues with hypersensitivity. I've always had them and they've just got worse over time. To the stage where I have panic attacks if my hands feel dirty. I have also just (today) been diagnosed with hyperacusis, which is sensitivity to noise.

[Heidi Rees]

There are so many disabilities that go hand in hand with autism that people just assume are part of it, my son has tourettes with his and others I know have lots of complex needs alongside their autism from ocd to dyslexia! My mother has tried getting my 15 year old sister diagnosed as she has loads of issues, she has undiagnosed ocd and oppositional defiance disorder and has been diagnosed with tricotilomania but she has also seen a clinical psychologist about her behaviour basically she either has autism or something far worse as she is a nightmare but all they said was that she didn't need to be stigmatised with a diagnosis and she was a typical teenager (even though she has had all these symptoms from a small child) my other sister has tourettes and my aunt has severe autism (which was diagnosed as mentally handicapped as it was the seventees). People don't understand these things can be genetic and I know loads of people with either more than 1 child on the spectrum or an autistic child and 1 with adhd - It's just sooo frustrating and I feel like telling them to come and take the 4 year old home for a week and then tell me there's nothing wrong!

[Nystagmite]

I have at least 2 disabilities that I know that are also generally found in people with Autism. Possibly a third; but not sure about that one.

[Nystagmite]

So, my assessment was just screening. It has taken them 4 months to tell me this. No-one can tell me where I can get the full assessment done. I am in South West England. Apparently, there are centres in Wiltshire and Somerset. Does anyone have experience of these centres, please?

[Mosiagi]

It wasn't until I started going to classes about to deal with having an autistic child that I suspected I was on the spectrum. Sitting there staring at my feet/hands or doing whatever and mentally saying 'Yep, I did that all my life, another box ticked' when I felt the teacher, for want of better word, looking directly at me suddenly made a lot of my past and present make sense. Now that I realise that I'm almost certainly Asperger's/Autistic, being a bit weird is easier to process and deal with. So, if only for your own peace of mind, it might be worth getting a diagnosis. I don't have one, don't feel one would be useful either, but if I'd had a diagnosis earlier in life it might have helped a lot, or it might have hindered me massively and presented new difficulties, I'll never know. Hope my little comment is useful in some way. Good luck.

[Nystagmite]

Thanks. I now have my diagnosis and if anything, it's hindered me. In the sense that certain people (who hardly know me, nor are they qualified to diagnose me) have questioned my diagnosis and in doing so, have denied me services I am entitled to.

 

It's because I don't fit their idea of what Autism is.

 

I spoke to my dad about that and he asked where one of these people got their qualifications from. I have a brother on the spectrum and have friends (male and female. I'm female, btw) who have it too and am nothing like any of them. Yet, we all have Autism.

[bedofweeds]

A very interesting thread. My grandson (6) has had all manner of 'potential' diagnosis given - all along the line of Autism / Aspergers.

 

I had to go round over the weekend to physically restrain him as once again he was knocking six bells out of his mother. Jekyll and Hyde doesn't even come close. He can trash a room in minutes. He leaves my daughter with bruises, cuts, scratches and torn clothing. We are all waiting for him to turn on his little sister (2)!!

 

Would it make a difference actually having a diagnosis? That is debateable - the GP is useless and she was told by the children's health centre to read the various websites as there is good help available on them.

 

It seems that when ever she asks for help, she is always greeted with the same comments - 'Are you here for his DLA claim?'

 

We (the whole family) have given up on seeking 'help' if you can call it that and just take it each hour by hour, day by day - taking each outburst as it comes.

As for claiming any benefit - totally confused how any level of money could help him.

[Nystagmite]

As for claiming any benefit - totally confused how any level of money could help him.

Depends on what his problems are. DLA means I'm not stuck indoors all day and can socialise, (which is a huge problem for me) some Autistic people, including me, have problems communicating and it means I can buy a tablet to enable me to communicate, etc. it means I can take taxis when I go out, I can buy ear defenders, the tinted lenses I need because I'm hypersensitive to light, it means I can take someone with me when I go out - I can't do a lot of things by myself partly due to my Autism, etc.

[bedofweeds]

Depends on what his problems are. DLA means I'm not stuck indoors all day and can socialise, (which is a huge problem for me) some Autistic people, including me, have problems communicating and it means I can buy a tablet to enable me to communicate, etc. it means I can take taxis when I go out, I can buy ear defenders, the tinted lenses I need because I'm hypersensitive to light, it means I can take someone with me when I go out - I can't do a lot of things by myself partly due to my Autism, etc.

 

But in a 6 year old???

 

He is taken out regularly, he has all of the latest gadgets and equipment. I was just trying to understand what the child would need money for that isn't already provided by the parents as they do for their other kids.

 

Maybe for adults it may be slightly different as you say.

 

Always makes me wonder why Autism / Aspergers in children equals extra money. I just don't get it to be honest what difference it would make to a 6 year old and as such, there really is no point in spending every waking moment, as some parents seem to do. to get a diagnosis.

[Nystagmite]

I know people whose Autistic children are doubly incontinent, they have no speech, they chew things, etc. All of those things cost money.

 

Many of them also have other disabilities such as Downs Syndrome.

[bedofweeds]

I know people whose Autistic children are doubly incontinent, they have no speech, they chew things, etc. All of those things cost money.

 

Many of them also have other disabilities such as Downs Syndrome.

 

In those cases yes I agree with you, but for the 'norm' and ignoring those rare cases that you quote, I still cannot see what a few £'s a week of benefit or even having a diagnosis will do for them, sorry.

My daughter has a friend that has a child with similar problems (seems to be a growing epidemic in this country!) She did fight to get her little boy 'statemented' and was given a diagnosis. She also claimed DLA on behalf of her son and was awarded HRM, MRC. She/her husband have opted off JSA onto IS (because he was fed up with being messed around) and they have acquired a Motability car. She readily tells my daughter to do the same for all these extra's and money besides as it makes their benefit income more manageable. Not once has she ever said that the DLA award is specifically for the little lad - it is just another top up in the weekly pot.

 

Now if that is right, is it really the right way to look at it?

[seanamarts]

In those cases yes I agree with you, but for the 'norm' and ignoring those rare cases that you quote, I still cannot see what a few £'s a week of benefit or even having a diagnosis will do for them, sorry.

My daughter has a friend that has a child with similar problems (seems to be a growing epidemic in this country!) She did fight to get her little boy 'statemented' and was given a diagnosis. She also claimed DLA on behalf of her son and was awarded HRM, MRC. She/her husband have opted off JSA onto IS (because he was fed up with being messed around) and they have acquired a Motability car. She readily tells my daughter to do the same for all these extra's and money besides as it makes their benefit income more manageable. Not once has she ever said that the DLA award is specifically for the little lad - it is just another top up in the weekly pot.

 

Now if that is right, is it really the right way to look at it?

 

 

Of course it is, these children need extra care and support. If they didnt they wouldnt be entitled for the extra benefits.

 

There is a very wide spectrum with regards to who needs what etc. What one childs need could be greater than another who has been diagnosed. Its not the fact that you have been diagnosed with with some kind of autism, its how it is effecting the life of the child and the family.

[Nystagmite]

The thing is, each child is different. They may need clothing, which is expensive. I've come across posts on Facebook asking for advice because their child smears and they need clothing which stops this. That clothing isn't cheap.

 

Your comments are very judgmental.

 

Can this be closed now please. I've got my answer and it just seems to be attacks on parents who claim benefits for their Autistic child - benefits they're legally entitled to claim.

[seanamarts]

Thread is now closed as wished by the OP