Anxious about even asking for a referral with GP

Page 1 of 1 [ 8 posts ] 

Muia
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

User avatar

Joined: 11 Apr 2019
Age: 39
Gender: Female
Posts: 54
Location: United Kingdom

10 Jul 2019, 8:11 am

Hi there,

I've just finished a 6 month batch of counselling through the charity Mind, the main reason I had the counselling was because I felt I had no identity and didn't know who I was. This was getting me down and for as far back I can remember, I've had anxiety, especially socially. I'd had previous counselling through the NHS, stress relief courses and CBT. After going through this, it became apparent to me and my counsellor that there is a possibility I'm autistic (or aspergers as it was previously known). My counsellor said he can't diagnose as he isn't able to give a diagnosis (which is fine as he isn't a psychologist) but in his expereince he said it has crossed his mind.

My counselling has now finished and I have been encouraged to get an assessment, in particular as it is taking up a lot of my mental energy and it would finally make me feel better just having a definite answer. I don't like ambiguity.

Can anyone help with regards of what to say to the GP through the NHS? I've not had good experience in the past with health issues and I just keep putting it off which in turn is making me feel more anxious and preoccupying more of my time in my mind. I was going to write it down but it's turning into an essay! What's the best way to get this across to the GP? I really struggle to explain my feelings (defaulting to the word weird) and easily get lost and end up going off on a tangent.

Can anyone give me advice or their own experience? I'm a female in my mid thirties and I never considered autism until I finally looked into my childhood and my feelings of inadequacy I've had throughout my life. I used to think maybe I'm lazy or moaning about nothing that everyone experiences. I never understood why I struggle to do normal things (just living life), social situations etc.

Thanks for reading.


_________________
Aspie Quiz
Your neurodiverse (Aspie) score: 162 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)

RAADS-R SCORE: 148

AQ score: 39

EQ score: 20


kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

10 Jul 2019, 8:16 am

Just sit down and explain, rationally, why you desire an assessment for autism. Mention your history with various therapies. Say you want to find the correct diagnosis so you can become a more productive member of society.

Play the game a little.

It might take a while to get an autism assessment once you are referred.



Muia
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

User avatar

Joined: 11 Apr 2019
Age: 39
Gender: Female
Posts: 54
Location: United Kingdom

10 Jul 2019, 8:43 am

Thank you Kraftiekortie for the very concise reply. Concise is the way forward.

I'm aware there will be a long wait but just making that step is a step in the right direction for me.


_________________
Aspie Quiz
Your neurodiverse (Aspie) score: 162 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)

RAADS-R SCORE: 148

AQ score: 39

EQ score: 20


Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 8,369
Location: New York City (Queens)

10 Jul 2019, 2:51 pm

It's important to write it all down. Otherwise you are likely to forget important things.

An organized list of bullet points would be better than an essay. Organize your bullet points into categories like "social difficulties," "sensory issues," "unusual habits and routines," "childhood developmental history," etc.

Also it might be good if you could bring a letter from your counselor explaining briefly why he perceives you as possibly autistic.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.


IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 72,422
Location: Chez Quis

10 Jul 2019, 3:21 pm

I agree with Mona that a list with organised bullet points would be best. You can elaborate on any point verbally, if your doctor asks for clarification. Also mention that your therapist has suggested autism. You may wish to do some online tests and print the results to show your doctor, because that will give objective data. Suggestions are the AQ test, an EQ test and the RDOS. You might even want to print this, and highlight or tick any areas where you match.

https://the-art-of-autism.com/females-a ... checklist/

Some doctors aren't familiar with the ways autism can present in women, so I find this 'unofficial' checklist very helpful. It will also keep you from overloading the doctor with an essay.

Good luck!


_________________
I never give you my number, I only give you my situation.
Beatles


Oakling
Veteran
Veteran

User avatar

Joined: 30 Dec 2015
Age: 48
Posts: 1,714
Location: UK

10 Jul 2019, 4:12 pm

Hi

I have had some similar experiences to you with anxiety and counselling.

I considered Autism for a while before going to the GP, but I’m really glad I did. I wrote out a list of things from childhood to adulthood that I thought may suggest autism, a list of reasons I wanted to be assessed, a list of ways this affects me in everyday life. I also took a copy of the AQ, AQ10 (which is on Nice recommendation for sending an adult for assessment) and another... I think it was the RAADS. I chose the GP I thought to be the most sympathetic and best listener (even though it took a month to get an appointment with him).

On the day of the appointment I was super anxious to the point of feeling really quite ill. I couldn’t speak properly to begin with and I was so glad to have all my paperwork with me, because in the end I just handed it over and he read it and asked me some questions and reassured me. Although he didn’t know that much about referring adults, I’d given him so much info (which he kept) that it helped him (he was grateful for this).

I did get referred, then I attended an initial screening appointment with the Adult Aspergers Service and now I am nearing the end of a years wait for full assessment. It is a very long road!! However, I am glad to have got as far as I have. By the sound of it it would be very beneficial for you to pursue this, especially as your counsellor has recommended it.

Hope this was helpful.



Muia
Yellow-bellied Woodpecker
Yellow-bellied Woodpecker

User avatar

Joined: 11 Apr 2019
Age: 39
Gender: Female
Posts: 54
Location: United Kingdom

11 Jul 2019, 2:25 am

Thanks everyone for the useful comments. I'm going to condense into bullet points under headings as suggested and take a few test results in. I score within the range for ASD and I'll do my best to not overwhelm the GP!


_________________
Aspie Quiz
Your neurodiverse (Aspie) score: 162 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)

RAADS-R SCORE: 148

AQ score: 39

EQ score: 20


Mountain Goat
Veteran
Veteran

Joined: 13 May 2019
Gender: Male
Posts: 14,770
Location: .

11 Jul 2019, 3:41 am

It actually took me about two years just to ask a doctor, as I have had people tell me and one was adament, that I had Asperges syndrome.. I was going in for other things but I wanted to ask while I was there, but every time I went to ask I would clam up and to get my mind to unfreeze, I would need to speak at a tangent, so it didn't happen.
Then, one day (Long story).. I happened to be looking on Youtube about faceblindness and after a day or tow of watching videos (I sometimes get faceblindness and so does my Mum) and a link kept coming up again and again. It was called "Ask An Autistic". Eventually I thought "Ok, I will click on it" as to be honest I had been trying to avoid the link. But the lady described her experiences so plainly and she said something like 60% of autistic people get faceblindness (Or was it 60% of people with faceblindness were autistic?), and other titles she did about various aspects of the autistic subject came up. I then was hooked. I had "Latched" onto the subject. Rarely do I latch onto a fresh and new subject. I just had to know more! I think I ended up watching more and more of her videos thinking "Poor people to suffer from this and that..." But in the back of my mind I was like "But I can relate to this, and relate to that... No, it can't be....." I just HAD to ask my doctor.
I learn that on the previous doctors visit that I had been so nurvous the time before that I could hardly speak as I kept clamming up, and that was related to a different issue I had, so on the last visit I had brought my Mum in with me and when I clammed up she took over. I was soo determined to ask, I took my Mum in too. She was a bit like "You know if you have it on your mind you may think you have it when you don't" sort of thing, but on the day when I went into see the doctor... (Which was four days of nurvous waiting which seemed like forever!) It was a doctor who I had not seen before and she had a reputation of being direct and lacking sympathy etc, and to stop my mind clamming up when I wanted to talk about it, I had to start in a very round about way and started saying about faceblindness, and the doctor nearly froze my mind there and then as she said "So?" as if it wasn't a problem... But I managed to ask if I had asperges. (I expected a yes or no answer). The doctor (Who is a lady doctor) said "Simptoms?" (Another direct one word answer). I clammed up! I couldn't speak! My mother then said how I had difficulty staying in a job and I was then able to speak again... I asked her if the energy loss situations I had could be autistic meltdowns and she said "No way" and she didn't believe energy loss was linked to the condition, but she asked for more symptoms, and I think I said one more possible symptom... Not a lot to go by, and she said she will refer me to an assessment team and it does not look likely they will accept me based on what I said, and that was that.
I was physically shaking coming out of the doctors surgery. I had to quickly use their loo! I didn't think I would be assessed. The doctor said they would send a letter and get in touch in about four days. I gathered my nurves together and then I was able to drive home. (Took a while of sitting in the car until I was ready. My Mum is patient :) ).
Now as I didn't know if I was going to be assessed or not, I had started a tread on a model railway site, asking about possible causes of energy loss, and many had replied. For years I have gone through the usual tests and nothing ever came up. When I mentioned I thought there could be an asperges link someone told me there was a new centre opened up four days before in my area, and that he had been tested but had not agreed with the result, so when he heard about the new centre and contacted them, they had him in straight away! He gave me enough details so I could look it up. I emailed them asking if they would be the ones who I would be referred to and if I was going to be referred as my doctor didn't know if I would be accepted. A few hours later of checking emails, I had a reply. The lady said my case had been considered and I am on the list, and I would recieve written conformation, and the new unit works alongside the old unit so though there is a long waiting list, they are hoping the length will come down. When I get further up the list they will give me a date as to when the appointment will actually be. She gave the approximate current waiting list length which is over a year. I thanked her for her reply... But I was still wanting to know about energy loss. I wanted a confirmation... So I asked a UK charity via email and they said their replies take about 28 days to come through as they are snowed under. Not had a reply yet, though I am not sure if the phone number I left with them is my phone as I don't now have a working phone... I use my Mus as I have no income (Starting another part time temporary job soon... Today actually. I hope I can manage it. Done the work before many times. I said I will give it a go to see if I am up to it) so I gave my mobile to my brother when his broke about a week ago. Someone had dialled but I couldn't dial back.
So I had then found this site instead, and (Brave for me but I was soo determined) about a month ago I joined to ask questions! And here I am! The energy loss turns out (And I am almost 100% sure from the description on a link someone gave me as one part was as if I had written it myself) that they are partial shutdowns. The last time I worked a part time temporary job was before Christmas and I was going in and out of partial shutdowns, and I have had issues where I was having about 6 or ore a day about two weeks ago... So I am really hoping that I will be ok today. I can't face signing on so I don't. So I could do with this job if I can manage it!