[ToeJam]

For any who don't know, in the UK the NHS is basically the abbr for National Health Service and I was in the queue for diagnostic assessment for 2 years (was a hard wait and had 3 hospital admissions in that time span).

Had already received a private assessment but due to how our Country is, the health service would not fully recognize it due to it not being done within 'the system'.

I suppose on the upside, for continuity sake, I could look at it as 2 independent assessments coming to the same conclusion by 2 separate and respected specialists in their field.

Saying all that... as far as I am concerned, I am me and when this dx was first suggested, I was bewildered... I never would have thought myself as having ASD. I still don't really get it...

Going to take this time to do some study on the subject and get a better understanding of how to move forward and essentially rebuild my confidence knowing that this 'difference' that I had always struggled with from childhood up is now a tangible thing... rather than having no clue and clutching at straws and trying to keep my head above water through the meltdowns and confusion in social interactions.

I was loathe really to make a proper thread about all this until I had something in writing... I accept it's a piece of paper... but, to have something written and in my notes... something that will alleviate any confusion among health care professionals should (god forbid) I end up in hospital again, or issues in future work/study... is a bit of a weight lifted and feels like a line has finally been drawn in the sand.

Making this thread for a number of reasons... one of them being is that from first hand experience (and seeing many threads in here of people going through the process of being assessed and how stressful that is) I know that the wait can be hard... the not knowing... the being messed around and passed on from Doctor to doctor... being 'supported' (and I acknowledge they try their best) by professionals who (in this country at least) have no more than 1 or 2 days of training in ASD that they take with them for how many years of vocation.

I've found it a really long road and a struggle that at certain points... I honestly didn't think I had the stamina for it any longer (hence the trips to hospital)... but through all that... I got there... and I hope that being open about my journey... it will give a little bit of hope to others that are still in the 'limbo' period.

[eskielover]

Understanding & knowing are the first important part of the process. Understanding rather than wondering why a behavior is what it is, is very important in one's life & also in the lives of those around you especially your wife.

Glad you got it over with now.

[Fuzzybear]

Hi ToeJam. Thanks for your post. I live in the UK too. If you scroll down the page and this site England - NAS and type in your postcode, it should give the contact details of your nearest support group. They're really helpful. Good luck.

[The_little_didgee]

Originally Posted by eskielover

Understanding & knowing are the first important part of the process. Understanding rather than wondering why a behavior is what it is, is very important in one's life & also in the lives of those around you especially your wife.

Definitely. My ASD diagnosis profoundly changed me life and the way I approach it. I no longer wonder why I am the way I am, and why I struggle with simple things and socializing. The diagnosis has allowed me to heal and forgive myself and others. It has also allowed me to finally accept myself and embrace who I am. It is freedom!

[EllieGreene]

Wow! 2 years is a long time to wait for NHS! Good thing you were already on the road to understanding. Thank you for the thread. I am sorry about the trips to the hospital. Did you begin any treatments during the time between the first assessment and the NHS assessment? If so, were any treatments helpful?

I am asking because my son has recently been unofficialy diagnosed HFA (asperger's). Initially, about a year ago, some mental health people who saw him said he was psychotic. His current therapist says that was a mistake. He had to go to the hospital and they were pretty sure they knew what they were seeing. They also said possible ASD. I am wondering how to help him besides what we are doing: Taking him to a psychiatrist (who prescribes an antipsychotic) and to weekly therapy. What do you think of group therapy or social skills training? My son is just 15 and does not like doing things with friends. He has no close friends and spends most of his spare time at home.

Anyway, I'd love to hear your thoughts on how you help yourself be happy.

Take care,
Ellie

[ToeJam]

Originally Posted by EllieGreene

Wow! 2 years is a long time to wait for NHS! Good thing you were already on the road to understanding. Thank you for the thread. I am sorry about the trips to the hospital. Did you begin any treatments during the time between the first assessment and the NHS assessment? If so, were any treatments helpful?

I am asking because my son has recently been unofficialy diagnosed HFA (asperger's). Initially, about a year ago, some mental health people who saw him said he was psychotic. His current therapist says that was a mistake. He had to go to the hospital and they were pretty sure they knew what they were seeing. They also said possible ASD. I am wondering how to help him besides what we are doing: Taking him to a psychiatrist (who prescribes an antipsychotic) and to weekly therapy. What do you think of group therapy or social skills training? My son is just 15 and does not like doing things with friends. He has no close friends and spends most of his spare time at home.

Anyway, I'd love to hear your thoughts on how you help yourself be happy.

Take care,
Ellie

Interesting question. Wondering where to start... so I'll being with 'socialising'... With nurotypical people, I struggle if it's anything more than 1-1... I force myself to go to group therapy and activities... but I normally take the 'listener' role... and when I get tired from noise stimulus, I put my earphones in quick (a noise that I can control). I have been off and on attending group therapy... but it's not tailored to ASD (it's actually for personality disorders... and as some think the two can cross over, it's the closest access point for attending)... but due to my symptoms, I've had to have cool off periods due to their risk assessment protocol (risk to myself, not others).

With that said, on Mondays I go to a social group that is specifically for people with ASD... and this is actually quite refreshing... I don't need to bother with pretense or concentrating hard to break down what others are saying... I can just get on with being me.

There are social skills sessions, but they are tailored around the condition... so that makes it a bit easier (I dread eye contact role play though ... the other night, the guy I was paired with was cross-eyed, which made it even harder!)

With regards to hospital, they thought I was suffering from psychosis as well at first. When it was first mentioned that there could be an asd link, a number of staff on the ward thought this was nonsense (now with better understanding, I realise this is because whilst being high functioning, I can fake conversation... does tire me out fast though).

Not sure if any of that helps.

As for staying 'happy'... I do enjoy my own company (and I am married, she's remarkably understanding and has put up with me for 16 years). I would say that if your son has specific interests that he puts above other stuff, encourage those interests (as long as they are legal)... they could serve him well in years to come.

[shinkansen]

Originally Posted by ToeJam

For any who don't know, in the UK the NHS is basically the abbr for National Health Service and I was in the queue for diagnostic assessment for 2 years (was a hard wait and had 3 hospital admissions in that time span).

Similar situation as you.

Both my ADHD and ASD diagnoses were with the UK NHS. Waiting time for ADHD was 4 months, waiting time for ASD was less than 12 months. Been pleased with service.

I think the bigger question is what you do with the diagnosis.