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
I did vaguely hear something about the films and a slight discussion about trying to show how autism presents in other ways. I do think there is a lot of ignorance about autism and if reflected more broadly on the media it would help for example like The Autistic Gardener series. The lack of understanding and awareness does mean that it is missed and misunderstood. That's why I wasn't diagnosed til last year. The only trouble is I may have found the root cause but I have 55 years of mending to do and adjusting and then integrating it more naturally into my life might happen or it might not but I hope it gradually does. So I have to keep Learning and asking questions and using sounding boards til I get to that point. I listened to a podcast interview with Dr Rachel Loftin on Thrive with Aspergers podcast. She talks about adult diagnosis. The pros and cons of getting a diagnosis. The pros being finally able to acknowledge yourself and being able to find like minded folk such as on here. The cons being mixed reactions of acceptance from others. I need to listen to it again She did also say just because you score highly on a diy AQ doesn't necessarily mean that you Autistic but it is a place to start. But it is hard to get a diagnosis and still have to explain yourself, or not be accepted or even rejected when the person has no interest or intention of learning more because they have a fixed view of you. She also said it's worth looking at those people because they may have issues of their own. I think the point of the forum is partly to support each other as we learn together more about asd so yes we are hyper focused on this topic. For some of us it's a complete novelty to be able to do so.the intensity of discussion might lessen as we adjust to this. But at the moment it's still a new thing for us where some of us can't talk at home here we can. And yes it does get carried away at times but then it's up to the participants to select what they reply to /continue reading or you steer it back on track or you join another discussion For some this is the only place they can talk about their deepest concerns and yes it is a bit self indulgent but it is a safe outlet they may not have elsewhere. I don't. You have people who don't want to know, or can talk about it at a basic level but to really discuss those innermost niggles without upsetting the people you live with but need to find out about…. Here is one place for that I think. Also for some, like me, it is a learning curve about how to be on and use a forum. I've never been on one before nor have some of the others so we are learning together. You keep talking about self responsibility and self indulgent.. I'm not quite sure what you mean by either of those. A comment I heard from a family member is that it's selfish to isolate yourself… maybe it is but maybe it's also just self defence or total need to not be overwhelmed So yes once I started my own journey and research I did indeed fill in the AQ online amongst a lot of other things And I took it to my Gp. When you are searching you want answers and try many different routes to find them. Before I even thought about ND I was searching. And I do have a borderline personality disorder handbook on my bookshelf. I don't think I minded what it was I had just as long as I found what fitted and got some answers to why I don't fit in and all the other things. So no I don't agree with you on that point. I don't think people are just jumping on the asd bandwagon. I think they are just searching for answers and the Aq is a sort of guideline on that journey along with other questionnaires like for ADHD or sensitivity or whatever else comes up whilst searching and reading. You find little nuggets and say that bit fits but it doesn't quite answer that so you keep looking. And you are trying to do all this research whilst around you is unacceptance because you look ok.
Like you say if you are lucky you may get support/services etc but what about those who are not lucky? It is a postcode lottery of where you get dr’s in the know, support groups or interventions. It seems some large cities and some authorities are more to offer than others that have very little so again here is very valuable. A high functioning person with Aspergers does have many challenges too and have to fight every day but again possibly not as obvious to those around them. A photographic mind is more a savant feature? Like they say if you have met one person with autism then you have met one person with autism. It's good to have discussions; I think you threatened our newly safe place but this must mean you hit on uncomfortable truths! There are difficult situations in life which make others behaviour seem trivial or disrespectful but sometimes the knocks in our lives are cumulative so they may seem trivial and lacking responsibility but added together year after year they get a heavier load to carry. Your diagnostic route was very similar to mine except I had quite a few overloaded and stressful life stories way before reaching the ND stage and until this forum felt high and dry post diagnosis . I do agree with a lot that you have said. But it's about stages I think. It's a bit like being solitary for so very long and suddenly the opportunity presents itself to be heard and out flows everything all at once and it takes a while to settle down. Loud mouth dyspraxia big time.. A bit overwhelming I suppose. And now I have rambled on far too long but I did want to reply as carefully as I could.so sorry it's so long and lots of errors..
Misfit61 said:It's a bit like being solitary for so very long and suddenly the opportunity presents itself to be heard and out flows everything all at once and it takes a while to settle down. Loud mouth dyspraxia big time.. A bit overwhelming I suppose
I love you Misfit61, so well written a reply.
so, if I don't fit there and I don't fit here....what does that make me?
Thank you but I do waffle on tho. That old chestnut.. even with a diagnosis I still don't really think that I fit in and feel a fraud . It's a long hard road to getting a diagnosis , to get the sort of validation we need for ourselves. Then you think ok now I've got my report come on girl take action make use of it and rebuild the wonky bits but I haven't so I feel guilty. I do so admire all the women who have come out and told their story; who champion our cause and who have found a way to make it count. They are inspiring and appreciate their very practical teaching and advice but I feel a million miles from that. And so I admire the courage of people sharing on here.
Sorry about referring to you as tortoise woman.....''twas meant as an endearment
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 day2 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.
I see what you mean..
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.