Advice on getting a late diagnosis?

Hi. I was diagnosed as ASD. Doesnt change who i am but exolains a lot. Ive contacted loacal group joined afult social group and it helps to know we are not alone. Kèep strong and get the rigyt help. I have battled with depresdion over the years. It helps to know we are not alone. Good to have forums to chat to other people in same boat. 

Karl 

MB91 said:

Thankyou for your reply,

Bonus ~ no problems at all! :-)

MB91 said:

Sending a letter to my gp sounds like a great idea as they are aware that I don't like going in.

It is good for both my GP and I as it helps me to edit and abridge the long-chain and divergent interweaving of my thoughts, and it prepares him to help me in better managing and using the available time-frame of the appointment.

When I used to go in to the doctor's surgery, I would get so anxious about being there I could only stammer to no good communicative effect, or have hypertensive lockjaw, chattering teeth or stress induced seizures.

I used to take explanatory notes with me to circumnavigate the communication problems, but I got so anxious to get back home that I forgot all about having the explanatory notes in the first place.

Then e-v-e-n-t-u-a-l-l-y 'slow boat to China session' it dawned on me to send the explanatory notes instead of myself ~ and thereby have a much more productive and healthier time of it all. Plus I much prefer talking over the phone as there are no observable contradictions and confusing distractions involving body-languages, pheromones, odors, perfumes, aftershaves and yellow lighting and all that hyper-sensory overload sort of thing.   

MB91 said:

Im just not sure where id start if I did write to them, how did you begin your explanatory letter? 

Well ~ with individual names, numbers and locations altered ~ here follows a copy of it to serve as template or in part inspiration perhaps for your or even anybody else's diagnostic request letter:

Dear Dr Good-one,

                                   As you know, for many years ~ I have been endeavouring to find some therapeutic assistance to achieve a definitive understanding about my psychological issues; in order that I may better manage the physiological ones, and this has not as such occurred ~ more the opposite if truth be told.

     Thus, feeling somewhat more frustrated than physically assisted, I ended up calling the National Autistic Society helpline at the end of May [2013]. I discussed my experience of things with the advisor, and was then advised that I should contact you, have you refer me to someone who is experienced in the diagnosis of adult autistic spectrum disorder and also that they would send me an information pack in the post; to help me make sense of things ~ which it has to quite an amazing extent!

     In order that you may understand what I am referring to, I have photocopied and put together three four page documents from the NAS information pack ~ in a suggested reading order that is listed as follows:

1.) The sensory world of autism

2.) Take The A.Q. Test

3.) Diagnosis: the process for adults

     In regard to being referred to an appropriately qualified diagnostician, the NAS advisor gave me the name of a Dr Never-did-meet, Consultant Clinical Psychologist, in the county of Elsewhere, with his telephone number being: 00000 000000 ~ as being the most local [home-visit] option.

     I do of course wholly appreciate any suggestions or concerns that you have in regard to this information and request, and if I do as it appears have ASD ~ a formal diagnosis could very well pave the way for a better understanding for the mysterious non-epileptic seizures, the odd reactions and sensitivities to specific types of medication, and what is or or not going on physiologically, psychologically, or both.

                           With complete sincerity

                                    Signature

                                  Deepthought

I was referred to be assessed for Asperger's Syndrome in February 2013, and diagnosed with ASD on the 13th of May 2015, when I was aged 44, and the diagnostic report arrived in the middle of July 2015.

MB91 said:

Thanks again for your help.

Very glad to have been of some assistance. :-)

hi thanks for your reply,

I understand its a long process but fully intend to wait it out until I get a diagnosis either way and if it turns out that it isnt what I beleive to to be then hopefully I can get the help I need to find out. 

I myself have thought that if I have dealt with being this way my whole life what difference will it make and this is one of the reasons I havnt followed through with the diagnosis before now. Its hard to explain but I feel as though something has 'clicked' and I now have the drive to push this if I need to. I know that knowing wont solve any problems but I now feel as though it will benefit me greatly as even just reading through some of the threads on here and finding people I can relate to already has helped me feel more comfortable, for want of a better word. 

Thankyou again for your advice

Hi,

Firstly please stick with it as the diagnosis is worth getting (with out it you will still have the problems but can't prove why)

My own struggle was long and that was with a supportive but ill informed G.P.

I became very familiar with N.I.C.E guidelines and with the N.H.S trust commissioners   (sufficient to say that autism was the only condition where the waiting time for diagnosis was over 10 times the maximum expected by N.I.C.E)

Do mention it to your GP who should then  administer an AQ10 the first step listed by N.I.C.E in getting a diagnosis.

Then you should have to complete an A.Q 50 used as screen to see who needs to have a full assessment, then you wait for the face to face assessment..

Make N.I.C.E your friend quote it to your G.P and if necessary complain. You have rights and don't be afraid to use them.

I wish I could say it will be a quick and easy path but the odds are that it will be a lengthy struggle but well worth it. A diagnosis really helps.

a simple practical piece of advice would be to find an online self test version of the AQ 10 and AQ 50 it will mean the questions don't surprise you and give you a rough indication for your own piece of mind that it is a battle worth fighting. (be ruthlessly honesty when answering don't base answers on what you can do on a good day or if you really struggle)

You mention other mental health problems and your diagnosis is critical if you are not to be steered down unhelpful and even harmful paths.

The problem is that many think because you have masked in the past the you can continue to do so ignoring the fact that the masking is causing you harm and this harm will only get worse.

I wish you every success and can say that while no magic bullet a diagnosis is a starting point to understanding your self and how to stop fighting and learning to live with and even celebrate your differences.

All the best Dave..

thanks for your reply,

I was thinking of doing the same thing, writing a list of what I want to say and perhaps reading it off or handing it to him

I'm 33 and currently on the waiting list for an assessment. I've been fobbed off at the docs before and turned away with depression. When I got my referral I made an appointment to specifically talk about autism - make sure it's the only focus. I wrote a list and took it in with me.

Don't leave that room without the outcome you want!

Good luck!

Thankyou for your reply,

I will definitely give them a call and request a pack.

Sending a letter to my gp sounds like a great idea as they are aware that I don't like going in. Im just not sure where id start if I did write to them, how did you begin your explanatory letter? 

Thanks again for your help.

Thankyou for your reply and suggestions, I have done some research over the years and have taken a few tests either online or printed which are similar to the AQ10 which you recommended but I find these quite difficult to answer as I tend to over think the question.

Ive just taken the test and scored an 8 I then read through some of the site and though im a male have found it very relatable, thanks again for suggesting it to me. 

Hi MB91 ~ and welcome!

Regarding:

MB91 said:

I was wondering if anybody has any advice on getting a late diagnosis? 

If you telephone (at any time) the NAS (National Autistic Society) helpline: 0808 800 4104, and listen to the instruction about getting an information pack which involves pressing number one on your keypad, then asking for adult diagnosis information pack, and leaving your name and or your address. It can take about a week or two to arrive, depending on demand, but it will help you work out what's what with getting diagnosed.  

Or from one of the site moderators there is this usual advice also which might prove helpful perhaps:

Unknown said:

Hi NAS35320,

You may like to contact our Autism Helpline team who can provide you with information and advice in regards to getting a diagnosis.

You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.

Alternatively, you may find the following link from our diagnosis page useful:http://www.autism.org.uk/about/diagnosis.aspx 

Ayshe Mod

Basically when I got my information pack, it had a document in it called 'The sensory world of autism' ~ which I photocopied and I ticked all my hypo and hyper sensitivities and crossed those that did not apply.

Then there was another document called 'WIRED Take The AQ Test' (mentioned and linked above by Bagpuss7) which I did with a friend who is a psychologist as the questions are a bit more suited for Neurologically Typical people (NTs) rather than Neurologically Divergent people (NDs) like ourselves ~ so if you get vexed or bewildered by the questions they have been mentioned on various threads here and elsewhere, we can help also if need be perhaps.

Then there was another document called 'Diagnosis: the process for adults' which I copied like the others, putting it at the back with an explanatory letter on the front and stapled them altogether and sent it recorded delivery to my GP.

My GP phoned me that week ~ as I am bit medical center and health worker phobic myself, and he very much agreed with me and the information, and I got referred and diagnosed eventually.

If any of that helps possibly?

There are a load of us on here who have been diagnosed in 40s,50s,and even 60s, so don't think of 27 as "late". Why don't you do a little bit of online research - eg take a test and see if it does seem to flag up that you may be autistic. Then that gives you a way to raise it with your doctor.

Try this one for starters: https://musingsofanaspie.com/2013/01/08/taking-the-aq-10/

PS that website has some really good stuff on, especially if female. Check out the "I think I might be autistic" section https://musingsofanaspie.com/adult-diagnosis/