Second opinion on my previous non-diagnosis

Hiya,

Well something causes your distress and it is important to know what that something is; autism or otherwise, you need the right answer. You do well to double check by asking for a second opinion.

Have a good, hard, critical think about your childhood. Yes, traits need to have been present then. Autism does not appear out of nowhere later in life, albeit it may not be recognised or cause a problem until later in life. Those traits don't necessarily need to have caused a shed load of problems in childhood. Any child loved for who they are can thrive. That means autistic ones too. But the traits do need to have been there very early.

Even if you do fall short of the diagnostic criteria, they have noted some of them. And those traits might well mean that this forum and an ND solution rather than an NT solution is appropriate for you with some things.

I went for a screening apt at my local autism assessment centre about 2 years ago and was so anxious they would not offer me an autism assessment, they just said I had a problem with anxiety. I was told I was entitled to a second opinion but they could not see me there so my GP referred me to the Lorna Wing Centre. He had to apply for out of county funding, and this was agreed early in 2020, just before we went into lockdown. I have just chased them up and found out that I am at the top of the waiting list! If you have a supportive GP ask them to refer you for a 2nd opinion. I volunteer helping autistic adults and I have so much in common with them, a diagnosis would just confirm what I already know!

We all have to work our way through these things, and what works for one, won't work for someone else! 

Thanks so much for your reply catlover. It was an nhs referral but I don’t know the job titles of those who assessed me. Sorry you struggled with your daughters assessment. I hope you’ve managed to get the correct diagnosis and help for her now 

PersonAnon said:

You have some 'symptoms', so in terms of knowing yourself, and how to navigate your way through life, is that not sufficient information? 

This is such a good point. Nail. On. The. Head.

But at the same time, I do completely understand the OPs emotional reaction to not getting a diagnosis. I would feel the same way. I have been feeling that a diagnosis would be validation, that there isn't such terrible things wrong with me as I have imagined from all of my social difficulties. All those insults, and negative reactions, and uncomprehending looks, all of it suddenly makes sense. They can all be explained in one word. I believed that a diagnosis would rescue my self confidence and self esteem.

Although the truth is that I am already doing this for myself by following the logic contained in your quote.

Thank you so much for that.

I think I will still leave myself on the diagnosis waiting list, but the assessors opinion won't matter that much to me now, hopefully. The explanations I have already found out due to my own research into Autism over the last couple of months or so, may well be all that I need.

Official validation would be nice, but it would be nicer not to need it. Especially seeing as how unreliable and flawed the process is. It would be a mistake to become too emotionally invested in that. This is easier said that done though I suspect. Probably takes some maturity and strength, either that, or cold hard logic. Maybe a bit of both :)

You're welcome, I'm glad my comments were helpful. It also helps me to clarify everything in my own head by participating in threads like this.

I think that putting the technical academic Psychology wording of "Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life)." into plain English actually means - if you had an extremely sheltered childhood then your Autism may not have been obvious at that time.

I can certainly tick yes to that.

Thanks so much for your comments. My primary school life sounds exactly like yours so whilst I experienced challenges they were manageable at that age. Really helpful to hear this perspective thank you.

From the  DSM 5 - Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).

That seems quite clear, although unfortunately it also seems open to the interpretation of the assessor. I'm self diagnosed only at present, and as this is already helping me a great deal, I think it may be a good idea to leave it at that. Rather than having to rely on someone else's interpretation of the criteria and what I am able to tell them. The process seems far from perfect.

I am also a person that did not knowingly have any issues with what may have been Autism whilst at junior school. Life was simple at school. I was in a tiny friendly village with small classes amongst accepting kids. I was also well supported in a loving family. These are all factors that can reduce Autism characteristics. Autism wasn't a known thing back then, I may have been considered only very shy, or someone who had difficulty talking to adults.

The thing is though I know I am Autistic from all of the research I have been doing. I don't need anyone else's validation. It would be nice to have it, but the process is so flawed, especially with the assessors interpretation of the above clause.

If an assessor tells me that I am not Autistic, then frankly I won't accept it. It makes too much sense, and fits too well to be potentially discounted by someone who doesn't understand the realities of how the bolded statement above has actually played out in people's lives.

I’m sorry to hear this. Clearly you have the feeling you are on the spectrum. For that reason, I would pursue it.

If the NHS did your assessment, who was assessing you (job title), and what experience do they have of adult females? They aren’t always right, and they aren’t always strictly honest with their results. Sometimes, dare I say it, it comes down to budget.

Now, I always use my daughter as an example. They told us she didn’t have Autism. Maybe a bit of anxiety, and some sensory stuff. I won’t bore you with the details. I had to sit there, with a heavy chest, in disbelief. Professionals. How wrong could they be!

Getting a second opinion from the same assessment service, using the same ‘gold standard’ that is set up to diagnose males isn’t ideal,  but you can try. It’s your right. Or do consider going for a private diagnosis. At least that way you WILL get a diagnosis or clear explanation of your behaviours if it’s clear you don’t have autism.

Privately, you’re more likely to be asked the right questions, as opposed to making up a story with items, or being asked if you know what friendship is.

Thank you for your reply, my husband also agrees with your point of view. I can’t quite put my finger on the reason other than it would feel like a relief and I could finally make sense of all the things that have been challenging in my life. Maybe I need to change how I look at this. Thanks for the feedback. 

Perhaps it may help to think about it another way.

I confess that the emotional responses of others ('heartbroken' in your case at not being diagnosed; 'relief' - frequently - by those who have been diagnosed) leave me baffled, although I'm clearly in the minority, in that respect(!)  I can't relate to the concept of wanting an autism diagnosis. 

It's a purely clinical decision, to me. I didn't really have an emotional reaction to being diagnosed, I simply accepted the information (without much surprise, which may account for a lack of deep feeling). 

But we're all different. 

I guess the question is, if you had a diagnosis, what difference would it make? I think if people are going for Benefits it may be important, but if that's not the case, is there any reason to be 'gutted'? 

I am not ashamed of being autistic, but it doesn't fill me with joy either; it's a neutral thing.  It explains a lot and I wish I'd known earlier in life; with hindsight, I now understand that it's made some aspects of life a lot harder than they would have been; but I certainly wasn't desperate to be diagnosed with it.   

You have some 'symptoms', so in terms of knowing yourself, and how to navigate your way through life, is that not sufficient information? 

When you get a diagnosis, on one level, in my experience, nothing changes.  You're still you.

The thing is, to get to know yourself, so that you can find the best place in life ... for you. Does it really make any difference whether someone gives it a label?  

Just inviting you to think about it a little differently, which may make things easier for you.  Wishing you well, whatever.