Going Round In Circles.

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Is it normal to feel one can be going round in circles trying to work out if one may be on the autistic spectrum or not? I may have quite a wait as yet to be assessed. I am about 85% wanting to be assessed and 15% feeling that I should not be assessed as I could be wasting everyones time and also I don't get any serious issues... Well. Nothing compared to the issues many of you have.

Is it normal to be feeling like this? How many of you are in a similar situation where you really are not sure where you stand? Do any of you feel caught somewhere in the middle where you may not have any serious issues, but at the same time many things start to make sense by doing research into the autistic spectrum?
I seem to be caught in this loop of going round in circles which makes me feel either not to be assessed and walk away so the potential stress of a future assessment can be avoided, or wanting an assessment straight away to get it all over with (Though this does not seem possible).
In one way I don't mind waiting as I know there are those who have serious issues who need help, but on tne other hand I want to know either way to get it out of my mind? Though will I then feel that whatever conclusion is not what I think it is and then be thinking about that?
Maybe I just need to relax and try not to think about it.

What is standing in the way of you getting an assessment? Anything besides a long waiting list?

I do know that the waiting can be extremely stressful even if one is pretty sure what the outcome will be.

Just the wait now. It took me two years of wanting to ask to actually ask, as I (Rare for me) just could not speak... My mind would go blank every time I tried to introduce the subject. I had to talk about some other issue to free up my mind to speak.
Two years ago was when I took an online test as an ex gf who has asperges showed me the test when I asked questions as some traits she has I also have and I was curious. I didn't even know what asperges was. When she tried to describe it some things I said "But I do that" and I thought I didn't have it! I didn't connect the two at first.
The test said that I was boarderline and to see a doctor. I kept wanting to ask just incase but... "Grrrr!" It just wasn't working. I just could not speak!
Well, fast forward to four days before I finally asked... Actually about six days... I was looking at Youtube about faceblindness, so for those two days I was watching video after video on the subject. It is something that I get, my Mum has had and was something my ex gf has. Now one link I kept noticing which I was trying to avoid was a link called "Ask An Autistic". I had been trying to avoid the link because I didn't want to be taken on an autism loop, and I had put the subject out of my mind previously. I knew some things the ex.gf did or had I did not share and it is why I had reasoned that I didn't have it, as when I took that online test, I had to ask her questions like "What's stimming?" and she said rocking back and fore or flapping your hands (Apart from flapping my hands as a reaction to something gorey, I don't flap my hands so I put "No". Since found out stimming has many forms, and in the past I have stimmed, but was told off on the many times I had done it (Either in school or in one of the jobs I was in) so when I tried the test again just before joining this site, I was alarmed to find I had a score of 43 out of 50 when 30 was about the boarderline? I had previously had a score of 31. I didn't realize it was the same test until half way through.
But when I watched "Ask An Autistic" the kind young lady semed to be so good in her descriptions that when she said that something like 60% of people who have faceblindness also are autistic, my heart started to jump. I mean... Gosh! Were the people in the past which told me or asked me if I had asperges or autism right? I had either said "No" when asked at a hospital when it took me 6 hours to have a blood test as it had taken me about 4 to 5 hours to recover enough so I could get up and walk... (Was soo embarissing as I ended up in A&E where the man who saw me (Doctor?) asked me as he seemed to think I may have it? (I didn't really know what asperges and autism was to be honest despite having had a gf with asperges who has an autistic son as I only saw them for about a week or two a vear as it was long distance dating via the internet for most of the time).
Well. Other people who had thought I had had it I just did not take seriously. One man who I was friendly with had almost committed suicide and I had not known. I visited him several months after it had happened and I didn't even know he had been in a coma in hospital... It was all such a shock to me... He and his wife were splitting up as she couldn't cope as she had been through so much (And so had he)... and his had a support visitor (I saw him in his garage which was also his own little den he took visitors to when we called over) who he introduced as his girlfriend... (She didn't correct him so I thought he was being serious! Turns out that it was his humour). Anyway. The whole event and news of what had happened that when he told me he was found to have asperges and then he said "And I believe you have it too" that I just could not take it in. I really thought when he said that he had gone mentally insane? It was such a shock!
So in the past I had mostly laughed it off or just thought "Why do people think I have asperges?" and thought nothing more about it!

Umm. So even before this, it took quite a journey before I actuall asked a doctor if I had it and I actually half expected a "Yes" or "No" answer! I had to wait four days to get the appointment and I had learned on the last appointment (As I seem to often clam up at doctors and also I don't seem to retain the information that they tell me. I also sometimes get when I even see the receptionist some sort of evnt were I don't seem able to work out what the receptionist is saying to me when asking for an appointment, and she has to write it down... especially if another person is talking in the next window etc.. Yst she speaks loud enough and she speaks good English).
The doctor who saw me was one I had not seen before, and she was known to be a bit insensitive and straight to the point... I started to talk in a round about way so I could prevent my mind from going blank so I would clam up... So I started to say I had faceblindness to which she interupted my flow and said "So?" (As if in itself this was not a problem?) and I was able to put aside her comment and then ask if I have asperges... She then, straight to the point said "Symptoms?" I was just not mentally prepared for that and I clammed up! I could not think or speak! Good job my Mum was there! My Mum said "He just can't stay in a job" (Or words to that effect) where by then my mind had clicked back in and I was able to say another small clue (Can't remember what I said but it wasn't much to go by).
She said "I will refer you to the assessment team but I doubt they will see you on the information that you gave. They will contact you in a few days when they will meet and make a decision to see if they will put you on the list", but she did say she was doubtful.
While walking out the drs surgery I was shaking. I was thinking to myself "What have I done?" as I was being referred to a mental assessment team (Who deal with the autism spectrum and other conditions) and I am not mental... The four days wait for the drs appointment were hard enough as it had been a bank holiday first and I had asked for an appointment on a day where it was quieter when the drs surgery was back open again... Though the receptionist said they don't get quiet days!)
After seeing the doctor I had put a post up in a more secluded but popular model railway site (Secluded as this site one has to join to actually view the threads and I joined by invitation from another member though anyone can actually join) and I had had several replies from people in a similar position and one man said that there was a new assessment centre that had just been set up locally in my area... And he contacted them as he had been assessed and told he wasn't on the spectrum, and as the new centre had just opened, they had him back in straight away and he has been re-assessed and they say he is on the spectrum...
Well, he said to contact them, so I did. I didn't want to conflict with the decision to see if I am being assessed or not, so I made that point clear, and the email reply was that they both work together and my case has been accepted so I am on their list to be seen and I will have written confirmation of this in the post (Which I have had). She also wrote that the waiting list had stood at 14 months but they hope it will be reduced. They can't give an appointment date yet as it is too early, but anything I need to know to get in touch.
They have been very good. Very friendly and supportive.
So I am being patient...

It's nothing like you fear it is. They are nothing like GPs (who know nothing about us) It's you and a person with a lot of experience of dealing with people like us. They say hello, you say hello or not if you are unable to, it's fine.

In mine (two years ago) we went and made cups of tea together at this point. Me convinced that she was now convinced that I am not autistic at all. Then we went into a little room and sat down and she asked me why I thought I might be autistic. I had two reasons and when I'd given the first she tried to move on to question two but I hadn't finished and had to rush back to finish my answer to question one. Instead of getting irritated with me on trying to rush me she sat back and let me finish fully. I knew almost nothing about autism, had never interacted with anyone on the spectrum (knowingly) and didn't know my behavour (need to explain in full) was a clue that she was experienced enough to pick up on.

The assessment was about three and a half hours and had about three hundred questions with a few sections not being relevant to me. At one point I cried because she understood something I said and no one ever did that before. This led her to explain to me that until I had cried she had not realised I was upset. I thought my emotions were clear on my face and it turn out they are not. This explains so much of my past. Some other things came out such as the fact that I do not make eye contact normally which I had not known.

So, I advice you to go to the assessment but to see it as a way of finding out things about yourself and the way you come across to others from someone with experience. If you are not an Aspie they with have some idea what you are. It's not an exam, pass or fail.

Mine was in two parts, a week later I went back to hear the assessment and to discuss it. My diagnoses is ASD most closely fitting Aspergers. I did bring up something about my future but she said I could discuss it with the councilor. One of the five recommendations she put at the end of my assessment was that I receive counseling with someone trained in autism.

Two weeks latter I had my counseling appointment. I feel like crying while I'm typing this. Basically the lady took one look at me, decided I was clearly VERY MILDLY (as in not at all) autistic and needed no help at all. She got me to fill out the how depressed have you been over the last two weeks form (the least depressed two weeks of the previous decade) which I stupidly told the truth in, told me there was nothing they could do for me as there was no one trained in autism. In a friendly way she managed to get in that her own daughter was autistic (strong implication of real autism unlike me who was so obviously fine).

Of the five recommendations non of them have happened. I don't regret the assessment but I wish I'd known that was it. I wish she'd said when she'd read the assessment to me, that no one else would ever bother to read it other than me.

I've had some medical problems over the last couple of years and seen several doctors they have without exception assumed I can read their expressions, left huge gaps in information, assumed that I have no problems with communication, and in every way ignored my diagnoses which none of them have bothered to read. I was even forced to discus something in detail over the phone with one doctor while upset she put the phone down on me which left me having a meltdown. I've since changed practices.

This sounds really depressing, sorry. I am in a better place now but it was a real struggle that I would have dealt with considerably better if I had been prepared. I'd had no expectations before the assessment but was basically told my life would change with all the help and there wasn't any. Go in with no hope, and you will be pleasantly surprised but make sure you get any questions in at the second interview. It might be your only chance.

I'd rather go around in a circle than a trapezoid.....

Thank you for the description. Do you think that you would have had help had the counsellor been a bit more understanding? Are you sure this person was a real counsellor as they are supposed to make things easier despite if a person has a form of autism or not. I agree that a counsellor that has more specific experience with autism will be better suited but even one who has no autistic counselling experience should not have been on the attack like that or to try to compare you with others. I don't know much about counselling, but I am sensible enough to know that everyone is different so that each person may have different areas they want to discuss, and handles things in different ways. For example, stress for one person could spur them on a bit while with another it would cripple them. Every counsellor should at least know this.

Counselors have to take the individual person into account. Adapt themselves to the individual. They must not rely too much on theories they learned in school.

One therapeutic method might work for one person---but might be disastrous for another person.

That was my thinking. Why I was asking if the person was a real counsellor, as to compare a person with someone else and say the other person needs help and you don't because you are not the same indicates that the person is not that gifted in counselling?
I have only once had counselling, and it wasn't what I expected it to be, and also, it was actually better. Ok, it may not quite have addressed some of the problems I was facing, as it was only six hour appointments, but it did mean I opened up a little. Opening up is something I find so hard to do!

We have been chatting here for a while now, so please forgive me if I feel friendly enough to be blunt and overstep my position.

I get the sense from this thread and others that you are apprehensive from getting an evaluation, and it seems to stem from some sort of idea that if you get evaluated, whatever the results may be, it will somehow put you in a pickle.

It seems like you are worried that if the results come back that you do not have it, that you will maybe lose some semblance of understanding about what your issues really are. Maybe you are worried that this will make you feel more confused and further away from improving on them.

On the other hand, it seems like you are worried that a positive diagnosis will lock you into a track that you don't desire. For some people, a positive diagnosis can feel hopeless, as there is no real cure and its effects can be extremely challenging.

With regards to that, I can see how you might go back and fourth. Is it a wast of time? Is this some information you might be better off not knowing?

Of course, only you can make that call, but I can at least tell you how I see it.

Clearly you are stuck on this question to the point that you are thinking about it almost every day. For this reason alone, I think you should get evaluated. At the very least, it might help you free up some of your mental energy for something else.

On another note, a diagnosis is merely someone's opinion. There is no blood or DNA test for autism. It is a subjective evaluation. A positive diagnosis does't mean anything other than that a professional person thinks that there is enough of an overlap in your experience and a set of pre-defined descriptors such that you broadly can be described as having the amorphous set of experiences which we colloquially refer to as autism. On the flip side, a negative diagnosis merely means that said person doesn't see enough of an overlap to apply the label to you.

At the end of the day, the label doesn't matter that much. You are you, experience life the way that you do, and will continue to do so. The only thing a diagnosis can do for you is resolve that question in your head to some degree, and perhaps let you tap into the strategies of similar people who have the same experiences as you and have found some ways to manage them better.

Thank you The Other. Yes, I am thinking about it daily so I think it is a good idea to be assessed. It is the waiting I don't like doing! The waiting... Umm. Something I am not very good at!

I think it's a really common way for people to feel whilst they're waiting for an assessment. Definitely similar to how I felt-back and forth between feeling really sure I was probably autistic, and doubting everything and worrying I was going to waste their time and end up feeling stupid and embarrassed. I've heard lots of people express the same things. I got diagnosed in Feb this year, and had about a 10 month wait. The only way I did get through it was by making an effort to not think about it too much, just try and get on with every day life and put it at the back of my mind. That wasn't so easy at the beginning, but then it got easier...and then it was on my mind a lot more when it got closer to when I knew I was going to be seen soon.

I wouldn't say I have any major issues. Relatively minor stuff in that I do pretty much cope with being a functional adult day to day, but when that builds up or they all converge (like right now i'm trying to arrange an engineer to come to my boat-I can't help think it should be simple, but it seems to combine all my social/communication issues together and I find it impossible) that causes me issues. I find 'peopling' every day pretty exhausting (I made the drastic decision to live on a boat to solve my need to live alone!) and it's a bit of a balancing act managing all my contact with people so it's at a level I'm not totally stressed out by.

You do, of course, get people who have bad assessment experiences-not even 'experts' are perfect but I would generally agree with fluffysaurus when they say it's nothing like seeing your GP. Although I was quite nervous, my assessment was almost relaxing, I felt really heard and listened to .Tbh I ended up a little bit worried that I was going to get a 'not autistic' verdict because the guy made everything I said sound so understandable and kind of normal (but not in a dismissive 'so what?' kind of way, just that they 'got it' and didn't make me feel weird for any of my weird stuff).

Thanks Boating Taxonomist. I am glad that feeling back and fore like this is normal.
A boat... A lovely thought of freedom... Probably not cheap though?

I think it's probably common. It happened with me. Especially being female, makes it harder to get diagnosed.

For me, it took several months of my doctor understanding me and interacting with me. I'm still in the process of completely figuring my brain out, if it's possible. I don't know my doctor's exact thoughts but my sensory issues along with my communication issues were what convinced her. It was tricky, because one of my favorite topics is mental health and so, I am quite chatty with psychiatrists and psychologists. But she recognized that. I am completely quiet about 95% of the time.

But a diagnosis, so far, has its pros and cons for me. It helps explain a lot, it helps explain how I am, who I am, and I don't feel /as/ incompetent anymore. But unfortunately, I will have to deal with these struggles I have for life. Particularly the sensory processing issues.

Good luck!

I usually communicate ok. I used to be dead quiet in school but I am not now unless I am in a crowded place... The only real place I tend to have issues of clamming up are when I go to the doctors, hospitals or anything to do with the jobcentre...(Which I am so petrified of these days that I go without money and never sign on when maybe I should.). I am not up to working full time. It is a struggle to do this part time low hours temporary work. Is partial shutdowns (I think they are) that are the main issue that I am getting that hampers me. That and throat closing if tensed up....

Thank you all for your replies. It feels a lonely experience.
I am slow typing as my hands are playing up.

I feel lonely in it, too. :'( Especially because we each seem to be quite unique in our own ways.
I am depressed today but hopefully it will transform into owning my differences.