A Formal Diagnosis...

[bid]

Hi all,

 

Many of us will have come across people who question the need for a diagnosis or 'label'...this can be family and friends, or even the professionals themselves.

 

I would just like to share with you the problems we are now experiencing without a formal diagnosis...

 

Some of you may have read my thread about my elderly father who is currently in hospital. He has AS, but not a formal diagnosis. This was for a number of reasons...as an Educational Psychologist before he retired, he recognised his AS, his family recognised his AS, and we had all adapted our lives to accomodate his AS. He and my mother didn't see any reason to 'bother' their GP, and couldn't afford a private assessment.

 

Now he has just been transferred from hospital to a Psychiatric Assessment Unit. None of the medical staff at the hospital would listen to us about his AS, and couldn't understand that much of his behaviour was 'normal' for him, even if it didn't fit in with their experience.

 

I spent this afternoon explaining to an SHO (yet again) about my father and his AS. In this new unit the SHO at least appeared to understand that his behaviour needs to be viewed within the context of AS, and especially his obsessive interests. If you have AS, and one of your obsessive interests is Christianity, of course you will keep disappearing to the hospital chapel

 

As I left, his nurse was actually writing the daily timetable I explained he would need in a new place (something the hospital seemed unable to do).

 

So, I suppose the moral of this story is that the lack of a formal diagnosis may be fine when everything is going well, and people have adapted to the person involved...but it is horrendous when things go wrong, because it's very easy for medical teams to ascribe AS behaviour to other things (in my dad's case, some form of dementia, although the tests for this have been repeatedly negative).

 

Bid

[annie]

Bid,

 

My thoughts are with you and your family <'> <'>

 

Annie

XX

[bid]

Thanks, Annie <'>

 

We just plan to get him home as soon as we possibly can.

 

Bid

[mrs q]

As the hospital department, where your father is ....have they got their own clinical psy.....they might be able to diagnios for you....

 

sorry if you try that.....

[Suze]

<'> <'> Bid hope he,s home soon.

[Tez]

Hi Bid,

 

Hope your dad is home really soon and that you manage to get help from someone who understands him.

 

I really do agree with what you've said about the importance of diagnosis even when things are going well, we're having the same problem with A because of a late diagnosis and the school's lack of documented evidence of earlier difficulties. However, one of the problems I have faced is the problem in getting referrals when someone is apparently coping. Our NHS health trust operates a policy that in order to obtain a diagnosis of an autistic spectrum disorder the person must not only fit the diagnostic criteria but must also be so badly affected by it that they need intervention to cope both at home and outside. If a person is seen to be surviving they won't get the referral. Don't know if other trusts operate the same policy.

 

On the letter from the Consultant to the GP confirming my son's diagnosis, it stated that "This boy is so badly affected by his autistic spectrum disorder and so badly handicapped that I am staggered that the family managed to cope without help and intervention for so long. It is a testament to their strong parenting skills that they have managed to do so, but I feel in future that we should all make a conscious effort to ensure that they are getting the help they deserve and need without them having to ask or beg for it."

 

Hopefully, my experience is not the norm but I somehow doubt it. I know without a shadow of doubt that I am somewhere on the spectrum, I am constantly told my son's autism is genetic but I know that if I asked for a referral for diagnosis I wouldn't get it.

Edited August 25, 2005 by Tez

[asereht]

Thinking of you Bid. Hope your Dad is home soon. <'>

[nellie]

Bid, <'>

 

Thanks for highlighting this problem. I'm dreading the day my father in law might have to be admitted to hospital, he's 86 in November.

 

I have supported parents with adult sons and daughters who have a diagnosis of ASD and I'm sorry to say in some cases it was extremely difficulty to get the staff (including mental health staff) to understand the problems.

 

I hope your dad gets home soon.

 

My best wishes to you and your family.

 

Nellie xx

[Jadensmum]

Bid,

 

Hope you get your dad home soon <'>

 

Denise

[phasmid]

Hope that he is well enough to come home soon Bid.

 

Take care.

[Flora]

Hi Bid, hope your dad is home soon and like everyone else I do hope he gets the help, support and understanding he needs and deserves.

 

I am a qualified nurse (have been full time mum for 12 years though!) and it annoys me when I come accross health professionals who are so pushed for time (or dare I say at times 'stagnant') that they can't or won't make the effort to keep up to date. The sad thing is that most nurses who work in surgical or medical departments have very little or no psychiatric training with the result that when patients with any sort of disability affecting their behaviour need medical or surgical treatment/admission the staff involved do not have the experience or training to understand them.

 

Best wishes to you and your father and thank you for highlighting this deep routed problem.

 

Lauren

[TylersMum]

Hi Bid,

 

Again, I can only re-iterate what everyone else has said. <'>

 

My dad had alzheimers disease and one doctor came out to see him when he had an infection, and a person with alzheimers reacts to infections quite badly by, in my dads case, becoming aggressive (which he never had been before).

 

The doctor pulled my mum to one side and said "don't you think it would be fairer to let him go?", shortly before my 4' 11" mum threw the 6' 5" doctor out of the house.

 

A second doctor arrived after a stressful phone call and gave dad some antibiotics, he was right as rain within 24 hours.

 

I know this isn't to do with AS or ASD but it does show how some medical professionals can disregard oder people and their uniqueness.

 

<'> <'> <'> <'> <'> <'>

[TylersMum]

Sorry - forgot to add that ds diagnosis of ASD made getting him into the school I wanted 10 times easier and gave me something concrete to work with.

[karin]

hi bid hope your dad gets the help he deserves i know its not easy not having a formal diagnosis when the specialist said to me my twins would not even have been on the spectrum i could have screamed i know they are as someone said on this forum your children are this good now as you have helped them immensly hugs and kisses to you and your family hope everything works out all right for your dad keep smilin luv karin xx <'> <'> <'> <'> <'> <'>

[Tylers-mum]

<'> Bid. I hope your father returns home soon and that with or without a dx, he's happy.

 

<'> <'> <'>

[bid]

Thanks everyone for such kind thoughts <'>

 

The assessment unit have agreed that he has AS 'traits' (aarrgghh!!).

 

But yesterday I discovered that he had untreated pressure sores!

 

The general level of care he's received has been appalling...not kept clean, other people's clothes, dirty sheets...

 

Just waiting to hear from my brother how things are today, and what we're going to do now

 

Off again in a few days to look after my mum and see to my dad

 

Bid

 

Lauren...are pressure sores inevitable? It's not as though he's bed-ridden...actually the fact that he kept walking around drove the hospital mad!

[mrs q]

Hope you are all doing as well as you can....and you dad gets the treatment that can help....

 

How is your mum doing?

 

All the best

 

Good luck