Autism vs You Think You Are On The spectrum

I'm beginning to realise that the Forum is a safe place. You've helped me see that Misfit61, thank you

 We use a lot of energy in our daily lives and even more when going through the health system for whatever reason. When we get the outcome it creates a mixture of responses and it is said many of us go through all the stages of grief. There is a post on this said much better than this. Relief, denial , guilt the whole lot. Again this is not easy to handle or explain when on the one hand it's all a bit confusing and left to manage and on the other you have dismissive attitude from family. And we do cope with these things differently as ND's. Which is why this is so important a bubble of safety if you like. 

When I got to the 2nd opinion stage my assessments were with a female consultant psychiatrist (specialist ASD, ADHD). She was quite odd, very disorganised, unstructured - sometimes I was surprised that she even had matching shoes on.

Skipped from one subject to the next. If I looked at her, she looked at the ceiling. There was no rapport between us. But is a known expert in her field. I think she's on the Spectrum.

When she finally decided on the diagnosis kept saying to me ' good on you, well done for working this all out'. I thought previously that I'd feel relieved but when it happened I instead felt flat and had no questions (which is unlike me). 

Thank you Spotty Tortoise your post about misdiagnosis and obsessional thinking was very informative 

Yes I can agree with you on the family front.. almost worse now. And yes my first assessment was clinical textbook series of tests and didn't feel confident they had broad experience of adults or women I felt very uncomfortable. The second one couldn't have Ben more different. So I do understand about the contrast. I also understand the adjustment we make as we come to terms with it. You said you are 45.. that is a lot of years to not know. 

Sorry about referring to you as tortoise woman.....''twas meant as an endearment 

I appreciated reading your post Misfit61. 

In some ways I might be feeling angry. Outside of this Forum I feel that i'm not supposed to speak on autism. More a case 'right you've got the diagnosis, we accept that, now let's move on'. This is my father's reaction at least.

I don't want my autism to become a huge feature either. Instead I'd like to find a way to have one informative discussion with my family - explain things to them, increase their awareness. Then we can move on!

In contrast, the subject is only about autism on the Forum. So for me it's going from one extreme to another.

Prior to my diagnosis I had psychoanalytical psychotherapy with a senior analyst who is also a psychiatrist. In some ways I wished that I had continued with this. No labels, no diagnosis's were made. I felt really heard and they got to know me well. I learnt about myself this way and gained valuable tools 

We did not discuss autism. Or - there was some recognition, but no more than that. 

I though then requested an ASD referral via the GP. And I regret doing so now. I didn't enjoy the assessment process at all. It felt linear, medical, quite narrow, selective. There wasn't an opportunity for them to get to know me. I almost felt as if I could influence the outcome through knowing so much about ASD. Apparently not I was told, but I'm still not sure

I'm not going to self diagnose again! It hasn't helped me really. But an analytical approach did -it was comprehensive.

But everyone is different, this is my personal experience only. 

JEP, 

My family has a degree of privilege that can not be over stated; we are highly attuned to the way you approach GPs to get the referrals we need, but I know that this is in the minority. Equally we've got the privileges associated with being able to afford private assessment if needed.

I suspect the majority of those on the forum who are self-identifying are without one or both of these benefits.

You mention two possible harms of self identification

1) obsessional thinking and

2) risk of a mistaken diagnosis.

It is perhaps better to consider a risk benefit analysis here

Obsessional thinking

Where does "special interests" begin and end? I've had 6 years of trying to wrap my head around my partner's experience of domestic violence as a man. I moderate in a secure forum which is dedicated to supporting men who have experienced violence and need out, but are afraid for their kids. I would count my thinking as obsessional, but because of my activist personality I have channelled it into helping others.

One thing I've seen with people self identifying as ASD is often they don't see how they can help themselves within a neurotypical framework, but given the new framework they develop strategies. You will have seen my post on the Spouse's journey; giving ideas on how to try different ways of expressing the information a spouse may need.

Misdiagnosis

If someone has current mental health support beyond the GP, they may be able to get health staff reconsidering their presenting condition, by discussion of their own learning. With GPs it's going to vary hugely...some might say 'yes, that's worth exploring' others, no. Self identification might open a door to a more intergrated management plan

Many people with ASD have comorbid depression and anxiety. I suspect the life many people with ASD lead would make them high risk for PTSD. All of these things can be treated with or without an ASD diagnosis but the response to treatment seems to be "odd" more often when dealing with neurodiverse brains (my best friend with ADHD got apraxia when he was tried on concerta, that's a REALLY rare side effect).  There is a lot of problems with adverse events being treated as "the patient's problem" rather than an indication that something different might make the difference.

Additionally the latest research suggests that CBT is probably not that helpful with ASD. Yet CBT is just about the only therapy accessible in Primary Care. Not responding to CBT is again seen as the patient's problem not a marker to try something else. 

This forum is pretty new in its latest iteration so has not yet formed a normative culture. If the self-identifying idea is concerning to you, then you can make it clear in your posts that you seek responses from those with formal diagnoses. Or you could suggest that people include in their bio what their journey status is.

There is always quite broad variety in forums. Hence my experience of moderation where we have tight rules and we both edit and ban based on behaviour. NAS has decided a relatively hands off moderation policy. You could communicate your concerns to them as well.

I'm not sure how I feel about 'the tortoise woman'!  We were helping each other and we can continue to, just need to get over the hurt of this insensitive and self contradicting post.  Thank you Misfit for your enormous and erudite contribution, you are certainly not a fraud, you are a lovely genuine human person. I look forward to our future conversations.

1 Sunny day
2 We found some solidarity and self identity in the face of adversity.
3 Misfit has a guinea pig!!!!!  Used to have  one as a child and I love the noises they make, they have the best faces, apart from horses and dogs and rabbits and cats and hedgehogs  and anteaters and tapirs.. Happy guinea pigging Misfit.  I'm so grateful for you guys and I'm sorry I kind of wimped out on this one.

Thank you Martian for making us feel less rejected.  We will get less fragile I think and hope.  This has seemed like a lovely safe place and I will be very sad if Elephant and others leave.  'ground control thanking Major Tom'

I see what you mean.. 

Blimey!  I'm certainly glad I wasn't involved in this.  I can do without the stress.

I was misdiagnosed for years with MH problems.  I was laughed out of court by my CMHT.  Didn't matter that I'd tried suicide a few times and was lucky to survive my final attempt.

In the end - I diagnosed myself.  Firstly, with BPD (the laughter from the CPN is still ringing in my ears over that one).  Then with ASC.  I had no choice, basically, because there was such a long time to wait before a formal diagnosis.  I, though, had no doubt.  And I was sick of being treated like an imbecile by supposed professionals.

Maybe this is why many people self-diagnose.  Because it gives them a context that they can understand.

And no one else seems to effing listen to them.

Well... now I am diagnosed.  My response?  I effing told you so, you idiots!

Self-diagnosis, if it can help until something else is available, is certainly valid in that respect.

If anyone wants to disagree, fair enough.  Lord knows, there's more than enough disagreement to go around for one thread!

I've daignosed mental health issues, tho only just found out in November that I've Asperger's Syndrome (confirmed by a medical doctor). I gather self diagnosis suits some people, but glad I've got an official diagnosis!!!  .

Guess it could be either , or it could be two folks giving a high five!!!

I put him out when I got home then it started to rain so he's busy munching back indoors

Anyhow, this mad old fraud is off to bed. Spotty ok...,and have woken MartianTom.

tomorrow is another day....and don't let your g.pig get chilly!

Just reread this and now see it is a reply to the question not your state of mind. Sorry! Think it's time for sleep. 

The purple and pink one.. I see it as two people reaching for a hug ... ? But sad and happy do seem to go together at the same time

Have you every noticed that the NAS logo is a sad face alongside a happy one..? 

Good idea.