Finding Employment

One factor, I think, is that in the case of diagnoses later in life, people might already have experienced these difficulties without really being aware of the reasons.  I always knew that I had problems with interviews, various work environments, interpersonal skills and longer working hours, but, I thought I was just an unusually keyed-up and anxious person and that, in order to succeed in the workplace, I just needed to power through all of this.  I probably did myself a lot of psychological damage.  

I went for various rounds of counselling, took a whole host of OTC and prescribed drugs and natural remedies, attended various courses and a public speaking class and developed a problem with alcohol, none of which actually addressed my problems but all of which increased my desperation.  Meanwhile employers simply stated that the things that really stressed me were "just part of the job" so I absolutely had to do them.  I've lost jobs over this but then neither they nor I know knew I was autistic.  I imagine that there will be plenty of others out there who will never be diagnosed so this may well be a limitation to highlight in the research. 

Another thing I noticed is that many support organisations will only provide support if you have a formal diagnosis.  Many don't, won't, haven't seen the need, feel nervous about it  or are on a lengthy waiting list.  So they are excluded. 

I am recently diagnosed at age 55 and both of my (undiagnosed) sons are also struggling, in their 20s with no special educational needs ever having been identified.  They still, however, clearly needed more support and, with hindsight, at an earlier stage.       

I was diagnosed three years ago at age 50 and I can identify with what you said, although most (all?) of the support organisations I have come across offer support with or without a formal diagnosis. I understand however that support varies across the country so I may just have been lucky where I have been living.

Here in County Durham, my adult son was discharged from the early intervention in psychosis team on the basis that he had no signs of any mental illness but rather of Asperger's and for this they signposted us to MAIN.  However when I contacted MAIN they told me that they needed a firm diagnosis to offer us any help, although we could certainly attend one of their courses and ask questions.  As my son refused to have a formal assessment, and indeed fled the house when the autism team came round, the only way I could get proper access was to put myself forward for assessment, involving another 18 month wait with no help or support. 

I've only just got my diagnosis and am waiting for MAIN to respond to a referral from our local trust but all in all I think this demonstrates how the system can work against families and also how some people might not be included in research studies because the are, in one way or another, under the radar.  

I've heard of others with similar experiences but, as you say, it varies considerably across the country.  I currently have a complaint lodged with the CCG over the issues this has raised for my family but probably also lots of others in County Durham.  

Here in County Durham, my adult son was discharged from the early intervention in psychosis team on the basis that he had no signs of any mental illness but rather of Asperger's and for this they signposted us to MAIN.  However when I contacted MAIN they told me that they needed a firm diagnosis to offer us any help, although we could certainly attend one of their courses and ask questions.  As my son refused to have a formal assessment, and indeed fled the house when the autism team came round, the only way I could get proper access was to put myself forward for assessment, involving another 18 month wait with no help or support. 

I've only just got my diagnosis and am waiting for MAIN to respond to a referral from our local trust but all in all I think this demonstrates how the system can work against families and also how some people might not be included in research studies because the are, in one way or another, under the radar.  

I've heard of others with similar experiences but, as you say, it varies considerably across the country.  I currently have a complaint lodged with the CCG over the issues this has raised for my family but probably also lots of others in County Durham.