Is there any point getting tested for Autism / Aspergers?

[Nystagmite]

It has been suggested by 2 people in just under a year that I probably do have some form of Autism. Is there really any point in getting tested? Part of me is curious; (although it may explain a few things; it doesn't change anything) but part of me also thinks it's pointless and that some of my behaviour is down to depression and the fact that I have 2 friends and a brother (and several relatives) with some form of Autism.

[Nystagmite]

Help please, someone?

[phoenix11]

I'm sorry I've only just seen this and hope you get the email to let you know you have a reply.

 

My answer would be a resounding 'yes' because even if you chose not to use the diagnosis in any way and prefer to keep it to yourself, it may open up a whole new set of doors in terms of understanding and support at a later date if you need it.

 

Aspergers does come under the Disability Discrimation at Work Act, so it may (or may not) help in that respect.

 

There are other forums and websites where you can get more advice and help on this - not in the least, the National Autistic Society.

 

As for whether it changes anything, obviously getting a formal diagnosis or assessment cannot alter the condition, but it can help you in understanding yourself, maybe even help others to understand you better, and within not that long a time, could help with the depression.

 

In fact, I'd say that suspecting you have some form of ASD but not knowing for sure, could even add to the depression instead of finding out for sure and then asking for what help is available to you.

 

If it is impairing your ability to live independently, hold down jobs etc, you could also ask about whether you would qualify for help with benefits such as DLA.

 

Hope that helps.

[phoenix11]

Here are some links which may help

 

http://www.aspergerhelp.co.uk

 

http://www.asd-forum.org.uk

 

http://www.aspergerfoundation.org.uk

 

http://www.autism.org.uk

 

You may also find there are support groups in your area.

[Nystagmite]

Thank you. What's the easiest way of talking to my GP about this, without coming across as someone who has just been searching the internet for stuff? Yes, I have been searching the internet; but that's been more to find out what happens during the assessment. (and not me trying to fit myself to the symptoms)

[phoenix11]

There are different ways to start the ball rolling and it depends how well you get on with your GP, or how receptive they are to even considering you may have a disorder which falls under the autistic spectrum.

 

Some GPs are, rather sadly, still in the dark ages when it comes to accepting even autism itself, let alone Aspergers.

 

Others are more enlightened. However, one common response to adults who want to 'find out' if they do have an ASD, is, "Why do you want to know? What good do you think it will do?".

 

I have no idea why any doctor would ask this, but they do. Yours may not, but it's worth thinking about this so you have it sorted in your mind why you are requesting a formal diagnosis.

 

Just as an example only - you mention you have depression. Well, there are many reasons why people suffer depression and not all cases are suitable for treatment with anti-depressants. If your depression is a part of having Aspergers, then having a diagnosis so you know first of all, and then having access to the appropriate health care professionals could help you manage this for yourself in the long term so it becomes far less of a problem.

 

If you don't have a very good rapport with your GP, then I would recommend contacting the National Autistic Society and chatting to them first of all. They have so much helpful literature, but will also listen to your needs and tailor the help they provide to those needs, at any one time. So, if your circumstances change, or you need help on another issue that crops up, they will provide it.

[Nystagmite]

Thank you. I don't have a GP as such, apparently. There is one I do get on well with; so will make an appointment with him I think.

[phoenix11]

If you are registered with a GP practice, it might be worth asking if they have a Mental Health lead professional at the practice. This would be one of the doctors who has chosen to specialise in, and support those patients who have MH issues, whether that's short term depression, or full-on permanent conditions.

[izzitme101]

I have been having this problem for years, I have been told that I have all the traits of aspergers, but cant possibly have it because it is so incredily rare..

Still battling on, and being forced to try to live a life where i am permanently struggling.

15 years its been going on now.

[Nystagmite]

I have been having this problem for years, I have been told that I have all the traits of aspergers, but cant possibly have it because it is so incredily rare..

 

eh? Autism affects 1 in 100 people and Aspergers affects 1 in 200 people. Hardly "rare".

[izzitme101]

yeh try telling them that, i think they just couldn't be bothered meself, am trying to find out how to get a private diagnosis, but no idea where to look at the minute.

[phoenix11]

Izzit - I can only suggest that you contact the NAS helpline and have a chat with one of their advisors.

 

Your GP has a duty of care and must not just simply refuse your right to help without very good reason. If that GP won't help, ask the NAS about escalating it to a formal complaint.

 

Also, contact any other organisation that can help - NAS and others provide excellent and simply explained leaflets.

 

If you Google "National Autism Groups | National Asperger Groups | UK Autism and Asperger Support |" then go down to the site that begins with "Windminstre"l and click on the Cache option (not the actual link to the page) - that will bring up a list of local Aspergers organisations. The actual page has been removed from the site, but the web page is still viewable.

 

Nystagmite - I'm not sure those figures are correct but it certainly is not rare. Quite simply, a few years ago, it was estimated that 1 in 1000 men had Aspergers, many of whom were believed to be undiagnosed, and of those who were diagnosed as adults, possibly as many as 50% only came to light as a result of being tested following a prison sentance.

 

Since then, there is the very slow but growing acceptance that a) more than 1 in 1000 men may have Aspergers and that whilst it was believed to have just affected the male population, it is now accpeted to affect females too.

 

So, the stats are open to being changed and changed again.

 

That said, the more people who are PROPERLY diagnosed, the better because it will help in the long term, maybe not for older adults, but certainly for children and young adults growing up.

 

It is also important not to just 'flop' along with a suggestion that you may have "traits of Aspergers" as this means absolutely nothing in terms of getting help and understanding.

 

This is not to say that getting a formal diagnosis magically transforms anything - but it is the beginning to opening doors of understanding and then being able to get help.

 

Another very good reason for insisting on getting a formal diagnosis is that for some bizarre reason, "Aspergers Syndrome" has become some kind of fashionable condition to have - which is really appalling because people who really do have Aspergers can find themselves living miserable lives when it's not been diagnosed.

 

There are people out there who claim to have Aspergers, who simply do not - they're just badly behaved and rude - and that then casts a stigma on those who genuinely do have it.

[izzitme101]

That, you may be surpised to learn, that 'diagnosis' and dismissal came from a consultant..

 

And yeh, i dont expect everything to be magically better, but it could at least help me with holding down a job i think.

I have never held a job for more than a year, because after a few months my communication with colleagues break down,

and i cant really explain why.

[Nystagmite]

There are people out there who claim to have Aspergers, who simply do not - they're just badly behaved and rude - and that then casts a stigma on those who genuinely do have it.

 

My brother has Aspergers. My mum was told for about 5 years that he's just badly behaved and that her and dad are rubbish parents.

 

In regards to the stats - NAS claim that there are many people out there who just go through life and get no diagnosis. I know 2 people who were well into their 30s when they were diagnosed.

 

This is not to say that getting a formal diagnosis magically transforms anything - but it is the beginning to opening doors of understanding and then being able to get help.

 

I agree. I'm in the middle of getting another diagnosis. I know it won't change anything. And I know the diagnosis that I was given last year won't change anything. It just explains an awful lot.

[phoenix11]

Izzit - it does not surprise me that you had such a pointless and inaccurate response from a Consultant at all. The medical profession is not in agreement with their acceptance of these conditions or how to help.

 

I have been told that a couple of years ago, the then Government required that all Mental Health teams could provide a psychotherapist who could specialise in diagnosing and supporting adults with Aspergers. So, your local CMHT should also be able to provide you with information on who is the appropriate person for a self referral.

 

However, try not to be put off and do contact other organisations or post on forums (links further up) to get some other views and perspectives on what might be helpful for you.

 

Sadly, the one down side is that it does seem to be a battle to get a proper and formal diagnosis once you're an adult, but persistence does seem to pay off.

 

If you can afford a private diagnosis, the NAS can supply you with a list of qualified practitionersnearest to you - although be prepared for that not being 'near' in the usual sense of the word.

[izzitme101]

Yes ive been looking at those links, i think im going to be pushing my gp this week, as she has reffered me to some

help organisation, but i think if it isnt the right help for me, it is going to be a waste of time.

I think that by having on my record that i have the traits, i think that gives me a right to see a specialist.

[plymaspie]

I was diagnosed with Aspergers in December 2009 but sadly there is very little help and support out there for adults with aspergers so in some ways its best not to know if you know what I mean because if you're an adult you're deemed able to cope and will be refused a lot of help and support from agencies such as adult social services etc.

 

I live on my own in a housing association flat and dont work and receive fortnightly benefits and thats my life. I rarely leave the flat because I dont feel comfortable in public and I have no family since my mother passed away in September 2008 so life is very isolated for me but I've always been a bit of a loner anyway.

 

Having a diagnosis doesnt guarantee you'll get this that and everything especially if you're an adult on the spectrum.

 

I was recognised in 2010 as Britains Most Bring it on Brit for my spirit and determination to succeed despite being autistic and am now concentrating on trying to set up a local befriending scheme for autistic adults and youngsters in my area and campaigning for services for autistic adults.

 

At the end of the day the decision whether to get a diagnosis or not is up to you but take it from me life wont really change much if you do get a formal diagnosis.

[phoenix11]

Hi Plyaspie

 

I'm sorry to hear of your situation which in some ways does share in common with many other aspies.

 

However, I would disagree with some of what you say as a general rule. There is a tremendous amount of help 'out there' - IF you know where to tap into it AND of course, depending on what is available in your area.

 

For example, where you aware that, something like 2 - 3 years ago, the Government requried all NHS Mental Health Care trusts to ensure that they had at least one healthcare professional (eg psychologist) trained to specialise in identifying and supporting people with Asperger's?

 

From that, if you can (or want to) tap into that source, they should then come up with a support plan.

 

Also, if you've not already done so, I would urge you to contact the NAS - because they have so much in the way of helpful information and helpline. They may also have contacts in your area that you can work with to help with getting your group going and to support you with your campaigning.

 

One thing I think everyone who either has, or who cares for someone with Asperger's will agree is that it is not easy to get all the help available and it can be a bit of a battle, which is one reason for getting support from people like the NAS.

 

Aspies being classed (often incorrectly) as always being on the high function scale, is not helpful either since, as you point out, they are often 'loners' and their problems and abilities to cope are often misunderstood or ignored.

 

However, not being diagnosed leaves many adults who have Asperger's, in an even more vulnerable position as they can go through life being stigmatised, ostracised, and even getting into trouble with the law because they have no understanding of themselves. According to the NAS, many adult men are still only being diagnosed after they have commited a crime (s), been hauled before the courts/ given custodial sentances and where there is a repeated pattern of obvious behavioural traits.

 

The other reason for getting diagnosed is to get a much clearer picture of the number of people who do have Aspergers so that the full scale of how many are affected by this condition cannot be brushed under the carpet.

 

It obviously will never result in a cure, and it may not bring much in the way of help initially, but even if it means finding out and understanding more about yourself (and hopefully getting a better understanding from family and friends) then that has to be a bonus, rather than just living in confusion.

 

I wish you all the very best with setting up your group - and hope that you receive not just members but also active supporters for the members and their families. It would be good to hear how you get on as time goes by.

[plymaspie]

Regarding the NAS and Government strategy for autistic adults I'm assisting both here in Plymouth not only with input from a genuine autistic persons perspective (which eliminates all the neurotypical guesswork that goes on) but also in working to set up a scheme in Plymouth which will not only benefit autistic people themselves who feel isolated and have difficulties making friends but also help to give their carers and families some time off too.

 

As a rule for adults there really isnt much out there at all in the way of help or support or at least a fraction of what there is available to youngsters and families affected by autism and thats why I am campaigning so hard in the south west and online to change that because when an autistic person loses their family and has to survive on their own in a world that is strange and confusing to them with no social skills thats when help is needed more but sadly so far a lot of agencies are under the impression that a person stops being autistic once they reach adulthood.

 

I will change the rules though and make the world a better place for autistic adults and no longer will they have to live reclusive lives and shy away from an ignorant society that both doesnt understand or want to understand.

 

Diagnosis is a double edged sword really it has its good points and bad points at the end of the day its the individuals decision.

[Nystagmite]

That's sad. I live in Plymouth too and have generally found that disability groups are non-existent - especially if you're under 60.

[leemack]

Only just saw this thread.

 

My partner was diagnosed with aspergers a few years ago in his 40's. He has always had some problems socially, but became increasingly withdrawn until he was agoraphobic and severely depressed. His GP was very unhelpful, and refused to refer to the mental health team repeatedly, until at one appt my partner appeared virtually catatonic, and he finally agreed to the referral.

 

Once we got access to the mental health team, everything changed. His depression was medicated, and off their own back they did a basic aspergers questionnaire which showed a strong likelihood he had aspergers. He was then referred on to a specialist unit who did a full and detailed assessment, including a consultation with his mother about how he was as a child. He scored very highly on the assessment and got his official diagnosis, he was then offered 6-8 sessions to help in dealing with aspergers, which we were unable to take up as we moved out of the area.

 

The diagnosis has been a great thing for us. As soon as I started reading on the topic, it was like they were describing my partner. By both of us knowing how aspergers works we have improved our communication and hence our relationship. From what I've learned, I'm now able to give him extra help with communicating with others and we avoid difficult situations and have made coping strategies for oncoming meltdowns. He works, and has help at work and adaptations made to deal with situations he finds difficult - like meetings and training courses (can't deal with going on trains and to unfamiliar places). It has made things difficult with his family - they feel there is a stigma to having this and don't tell anyone about it, his parents are scared by the one meltdown they witnessed recently, and his brother won't talk to him now.

 

Overall it has been a good thing to have the diagnosis, and he wishes he'd known years ago. He spent his whole life feeling different and felt that there was something he wasn't 'getting' about social interaction - now he knows.

 

So yes, I think there is a point to getting a diagnosis.

[izzitme101]

Think ill update on here now.

You have a very lucky partner leemack, im glad it worked out for you

I contacted a couple of those on the list above, and after some discussion, i have been told it would be pointless to

get a diagnosis. I am still pulling my hair out!

Basically they'r all telling me not to bother because theres nothing anyone can do about it.

Clueless the lot of them i think.

Going to think on another way round it.

[Nystagmite]

(thanks for bumping this thread)

 

I am now in the middle of getting tested. It is so frustrating though. I'm hypersensitive to noise and light. All I could hear at the first assessment was the clock ticking. I now have to have further tests done.

 

One problem I have, (GP and psychiatrist have both agreed) is that I have other disabilities alongside with similar symptoms.

[plymaspie]

As a person with aspergers myself and an ambassador for the national autistic society and autism strategy board member I say there is a lot of point in getting a diagnosis even if it may be a long and frustrating process and I am talking from personal experience (from the horses mouth so to say). Since the autism act was bought in there is now better strategies to deal with diagnosis and support and multi agencies in place to help those with autism related conditions if needed. So I say to you to harass your GP until they act because previously getting a formal diagnosis led to nothing but that's all changed. This is 2012 not 1912 so go for it and if you need any further help or advice please feel free to contact me.

[Nystagmite]

Thank you