Hello - Autism Non-Diagnosis

Hi Thom,

Warmest welcome to our community! I'm glad you've been able to talk to other members about this and hope that that has helped. You may like to look at our information about autism spectrum disorders:
https://www.autism.org.uk/advice-and-guidance/what-is-autism

If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:

https://www.autism.org.uk/advice-and-guidance/topics/diagnosis

Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: http://www.autism.org.uk/directory.aspx

And as aidie mentioned, you may like to contact our Autism Helpline team who can provide you with information and advice.  They'll be taking calls until May 19th.

https://www.autism.org.uk/what-we-do/help-and-support/helpline 

You can call them on 0808 800 4104 (Monday to Friday 10 am to 3 pm. 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 adviser).

Hope this helps.

Kindest regards,

Eunice Mod

good 

np,,,  here to help

Hey, Thom!

You are entitled to seek a second opinion, which either means going back to your GP to explain that you aren't happy with your diagnosis and ask them to refer you elsewhere, or paying for a private assessment.  Just keep in mind that if you go for a second assessment, it may reach the same conclusion as your first. 

Thom said:

She has always pointed out things that I do that may be autistic traits, but at the same time has reiterated that she isn't and can't diagnose me.

Sorry, this changes everything. I apologise. You gave the impression in your original post that it was your counsellor who was making you believe you were autistic and that it was she was the driving force behind going for an assessment. 

Thom said:

I didn't go into the assessment with my own diagnosis though.

You say this, but then say:

Thom said:

I did however feel that not being diagnosed would be the worst outcome for me as so much had started to make sense since last summer

When we don't get the outcome we expect, the result can be confusion, anger, disbelief. 

Thom said:

I feel my confusion is coming from the psychologist saying I do have lots of traits, but not enough that he'd give me a diagnosis. 

Again, you are entitled to seek a second opinion, just keep in mind that it may reach the same conclusion as your first. 

Much love,

Michael x

Hi Aidie,

Thanks for your many responses. I'll give them a call and see what they say.

I'll put together a list of my traits, but I'm out of energy to do so atm. One long reply is all I can manage today. I'm not used to engaging on forums like this. In fact, I don't think I've ever posted on any forum anywhere!

Hi Adele,

I'm still undecided about going back to see him or not, but as far as I know, I would have to pay for further appointments. I am on the waiting list to be seen with the NHS and I'm not going to take myself off of that list at this point.

Hi Michael, 

Thank you for responding. I can see how you have come to your conclusion, but I respectfully disagree with most of what you've said.

I don't think my counsellor has acted wrongly in putting forward her opinion, as it was only an opinion and not a diagnosis. Even if I'm not Autistic I've started to understand myself better through learning about Autism. She has always pointed out things that I do that may be autistic traits, but at the same time has reiterated that she isn't and can't diagnose me. I have done my own research into this and came to my own conclusion. I thought that I can see enough traits in myself and feel I have shared experiences with autistic people I've read about/watched on YouTube that I wanted an assessment for myself. 

I do agree that going into any assessment with your own diagnosis when you're not an expert can be harmful. I didn't go into the assessment with my own diagnosis though. At times since last August I've been thinking that an assessment is pointless as I didn't think my traits were enough for a diagnosis. Then other days I'd feel like they were more than enough. I did however feel that not being diagnosed would be the worst outcome for me as so much had started to make sense since last summer and if all that was false then I'm just as lost as I was then. In the end the psychologist has agreed with one of my thought patterns, just not the one that makes things clearer to me.

I feel my confusion is coming from the psychologist saying I do have lots of traits, but not enough that he'd give me a diagnosis. I understand that this is possible as most autistic traits are human traits. NT people can have a couple of traits and that doesn't make them Autistic. I think that some of the traits I believe I have he dismissed for reasons I don't agree with. I mostly disagree with the reasons because I don't feel I explained myself fully, or at all, in the assessment. Along with him introducing BPD into the mix as something I could be diagnosed with, without really giving any detail as to why. 

I'm still undecided about going back to see him or not. I only got his full report on Saturday, so I'm still digesting that. I am on the waiting list to be seen with the NHS and I'm not going to take myself off of that list at this point.

I agree with Former Member in that it is worth while waiting for a second opinion with NHS

Would you have to pay again to speak to the psychiatrist again?  Something seems a bit wrong about the idea that you haven't been diagnosed but they may tell you more if you pay again.  I don't know how these things work and I obviously don't know the person, but my gut reaction to someone who would suggest that is not too favourable.  Could you wait for a second opinion on the NHS?  I wouldn't give up yet and I've read that a lot of people are misdiagnosed with BPD before being diagnosed with autism.

aidie said:

Assessors regularly get diagnosis wrong

This is quite a bold assertion to make aidie. Do you have any empirical evidence to support this claim, or is it just your opinion? 

also

You may like to contact our Autism Helpline team who can provide you with information and advice.

https://www.autism.org.uk/what-we-do/help-and-support/helpline

You can call them on 0808 800 4104 (Monday to Friday 10am 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 adviser.

All the best,

Hi Thom

Assessors regularly get diagnosis wrong so please get a list of your traits and post them here in 2 groups

a. traits you identify with

b. traits the counsellor says you have ---- her opinion as another independent person is valuable

then experienced supportive people in here can give you amateur advice

Hi Thom,

I'm sorry to hear you're having to deal with all this.

I'm not exactly sure what you're asking for or what answer you're looking for, but hmm, it sounds to me from what you've written that the problem lies with your counsellor and not the assessor. What your counsellor has done by building you up to think you have autism is really unsound professional practice. There's a reason why some people are qualified to conduct assessments and some people are not.

I would say to you to follow the advice of the Psychologist and go back to see him for a follow-up appointment where you can discuss his findings and their implications for you going forward. 

If you don't want to go back to see him, then you could ask for a second opinion, and to see someone else. 

Your counsellor has acted wrongly by putting forward her own opinions ahead of the assessment, knowing how disappointed you would be if the results came back negative. After all, that's why she is your counsellor, and not your psychologist.  I can't believe how incredibly unprofessional she has been. And the result is clear: you're now confused because of her unqualified mis-diagnosis.

I've said this a lot, because it's true. The worst thing you can do when you go for any medical assessment is to go in with your own diagnosis (or one that someone else has put in your mind). When you do this, you're sticking two fingers up at those conducting the assessment and saying you know better than they do. Which could be true, but then why bother going for an assessment if it's just to rubber stamp your own diagnosis?

I definitely think that it is the actions of the counsellor that has lead to your confusion. If she had not put the idea so firmly into your head and you had not gone for the assessment, you wouldn't be feeling as confused as you are now. 

Much love, and keep us updated on what you decide x

heres whats you can do 

ask the councillor to list the reasons why she thinks you are autistic and let us know what they are.

Do not post your councillors name at any time.