Published on 12, July, 2020
Hi,
I'm fairly new to the Forum. Apart from starting a previous Thread regarding 'Grief/ Trauma' have stayed in the background and reading many posts. What often strikes me is the level of self diagnosis. Sometimes it might feel, I get the sense of ASD but often I do not. It feels like something else.
I begin to wonder if ASD is a more acceptable label. Obviously I'm aware that this is a Spectrum and understand the level of challenges are extremely diverse. I also know that ASD can have secondary difficulties, for example anxiety and depression.
Sometimes though, reading through posts, I feel that some members of this Forum have a different set of challenges which possibly have nothing to do with ASD.
Overall I find an obsession with ASD and a lot of immediate validation.
There are threads about assessment and how the AQ test could be an indicator. How the GP won't listen etc
From what I read, there are a fair few Forum Members who have a lot of contact with mental health and social services. Often they have self diagnosed ASD too.
And possibly this raises questions?
ASD can have multiple secondary complications.
Personally I think a lot of the responses on this Forum do not have anything to do with ASD.
When you have ASD, live with this day and day out, it's only then you realise the true difference. It's very difficult indeed. Not something you can easily describe.
I feel this forum is attracting members who have read about autism. Members who have pre existing, diagnosed mental health problems, who want to call the whole thing autism.
JEP
JEP, having been on diagnostic journeys with a number of people I have seen a lot of forums for ASD and ADHD. They vary hugely. Some are very heavily moderated and have forum areas where family of ASD/ADHD are not allowed to post.
The issue of self diagnosis is a tricky one.
Recently my big sister who works for an ASD charity here sent us all a screening test, and although she was under the threshold, all three of us siblings were over the threshold. Now I could work it out given by DCD diagnosis why I pinged the threshold...but my brother whose only diagnosis is "gifted" was pretty perturbed, even though he has two sons with ASD diagnosis. Will he go further? Unlikely. It doesn't serve a purpose. Our second sister has said she would consider diagnosis if one of her grandkids was struggling, to help the services to know what to look at it.
From what everyone has said here adult diagnosis is increasingly difficult in the UK. It's bloody tough to get diagnosis for ASD/ADHD as an adult in NZ where we live. SO got his ADHD diagnosis via a clinical trial, and had ASD screening done in secondary services because of his problems with the group education programs for anxiety were considered to be a marker of poor social skills (turned out that the facilitators were being stupid and his issues were valid, but his cPTSD was throwing out some very ASD signs and symptoms). SD20 got hers after I wrote a serious complaint letter to our secondary mental health services about their rejection of her referral because she was employed. SD16 got hers done privately, because of silly waiting times with the secondary services, but because it was under a family court order we had a tough time finding an assessor.
It has taken pretty much all my experience and my ability to use my work related networks to push for the right care for my family. I am pretty sure a lot of people seeking diagnosis don't have skilled advocates to help them get there.
Hi QuirkyFriend,
Obtaining a diagnosis for ASD in the UK is not easy either - it can be pretty uphill and quite stressful. Then when you get a diagnosis it can leave you (in my experience) feeling left high and dry. There are specialist support services here but these vary considerably, depending on where you live. Sometimes unfortunately there are none.
I feel that I've raised a subject which has left members on this thread feeling quite annoyed. But I am very wary about self diagnosis.
When I was diagnosed - this took a 2 year period and included a 2nd opinion by the National Clinic. At one of my assessments I presented well and I knew myself that I wasn't coming across as autistic. There were traits. When I went for a follow up assessment, at that point I was struggling with aspects in my life and it became clearer that I was somewhere on the spectrum. My traits were heightened as they always are under stress.
But there was a concern that I may have PTSD - some of my symptoms were akin to this. Therefore I was nearly referred down that route. I was lucky in many ways to have this option, the final decision was to get a 2nd opinion.
Once again, I kept presenting in a different way at the various assessments. The outcome was 'moderate autism'.
I was fairly informed about ASD by this stage. But it turned out that I also didn't have as much insight as I thought I did about the way I am.
The report upset me quite a lot. I really did not have that much insight.
As I say - am wary about self diagnosis. ASD can appear to be like something else. And other 'conditions' can also appear to be like ASD. It's very complex and almost impossible I feel to work this out yourself. And of course it may not just be one thing either.
But when you have ASD I think it's important for this to become integrated - rather than treated as a topic. Life continues. All a diagnosis may do is to help you understand your differences a bit more.
Continuously speaking about autism is an obstacle, like an obsession, it can take over everything. And sometimes I feel that happens on this Forum.
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.
Thank you. I can see that there are some people who care and are great thinkers, it's just quite difficult being lost in a world where I'm looking for guidance and see posts about wannbee ASD etc. I don't want to be in the wrong place, annoying those who are in the right place.
It is not a hostile environment...it is a very open and caring one......there are some lovely souls here ..