Autism

[deathrey]

Not quite what you asked @BomberPatbut have you shared with them that you don't have anyone you feel could be an informant? What feedback have they given? My sister went through the process with an informant and was assessed as not being autistic (lots of issues with the informant which I won't go through here) but she's now looking at being assessed without one as it's likely to be more accurate.

[BomberPat]

22 minutes ago, deathrey said:

Not quite what you asked @BomberPatbut have you shared with them that you don't have anyone you feel could be an informant? What feedback have they given? My sister went through the process with an informant and was assessed as not being autistic (lots of issues with the informant which I won't go through here) but she's now looking at being assessed without one as it's likely to be more accurate.

Thanks - it's hard to get through to them at all; all the emails are no-reply, and there doesn't seem to be anyone answering the phone. The link to reschedule the appointment isn't working either, so I can't just buy myself some time to figure it out either.

Part of me wonders if I could just blag the questionnaire myself, but I'd be scared it came back to bite me, aside from the bigger issue of that not being an honest appraisal in terms of actually getting an accurate assessment. At the moment it feels like my only other option is to wait for the appointment itself and explain then that I wasn't able to get anyone.

[deathrey]

It would only bite you in the ass if they said they wanted to interview the person. I guess you could take the risk and if they ask about an interview you could say the person is not willing?

Have they sent you the questionnaire? Do you think you could answer it yourself? My sister's asked for a lot of info about her under the age of 5, I filled it in for her but as there is only a 5 year age gap between us, my memory was hazy.

[mim731]

Apologies, I don't have anywhere else to put this and I think it's relevant. 

After going through the process with the questionnaires with my RTC provider (my daughter is going through it too, and I noticed many of her behaviours rang true about myself prompting me to do likewise) they have come back and said they don't feel an assessment is necessary right now for me based on the available evidence. Which has been a real gut punch as I feel I had just accepted the possibility that there may be something more going on with my brain than just my personality.

I struggle with transitions, and trying to take my brain from going down the pathway to now not is proving really challenging. I am slightly concerned that my Mum, through no fault of her own may have filled in the questionnaire with a more masked version of my behaviour in mind, simply because I don't tend to be completely myself even around family. Equally, it may just be that I don't fit the criteria and have to accept that.

I have been offered the opportunity to provide further evidence, and I wonder if sending a statement from myself and one from my wife outlining some of the ways I feel the potential traits I exhibit affect my day-to-day life and would help give the RTC provider more context? Has anyone else had any experience on this front? I'm not sure my best course of action, or if I should just be abandoning the whole thing?

It's funny, I wasn't bothered about a diagnosis for years, despite the urging of a few friends and family who suggested it might be worth pursuing and would explain a lot, and now it feels like it's hit me like a tonne of bricks that this may not be the correct route for me. I know it shouldn't, but somehow it has. Unexpectedly. 

Sorry for the rant, just not great at processing stuff like this, and appreciate it's just an email, I probably shouldn't be getting so wound up about it when other people have far bigger challenges in front of them. 

[BomberPat]

The reschedule link went from not working to just not being there at all, so I assume there's some sort of cut-off point after which they won't let you alter it.

I emailed them asking if I could reschedule, and asking about what I was supposed to do given I would find it difficult to find an informant who has known me that long (my immediate family are literally the only people I have any kind of contact with who would have known me before the age of 12), and that as much as it's asking questions about development, I find it slightly mental that a bloke pushing forty is expected to bring his Mam to the appointment with him.

They did send me the questionnaire, and I was planning to either fill it in myself and let them know that's what I had done (rather than blagging it), or just not complete it and ask in the appointment itself, seeing as I couldn't get through to speak to anyone ahead of time.

 

Anyway, I hadn't got a reply to my email as of yesterday, so I sent a follow-up. They didn't reply, but I got a new link asking me to schedule my appointment. So what it looks like they have done is seen my email asking to reschedule, not replied to it, not explained anything, but cancelled the initial appointment and invited me to rebook. Which means I've been able to reschedule, but with none of my questions answered, and still no clarity.

"Luckily" my Dad has invited himself to stay with us next weekend, as Hull are playing at Wembley. So I'm going to try and broach the subject with him, either directly, or just framing it as more of a general mental health assessment rather than explicitly an Autism thing, as I think he would have a kneejerk, "no you're not, you're normal, you were a perfectly normal kid" reaction to that.

[Hannibal Scorch]

17 minutes ago, mim731 said:

Apologies, I don't have anywhere else to put this and I think it's relevant. 

After going through the process with the questionnaires with my RTC provider (my daughter is going through it too, and I noticed many of her behaviours rang true about myself prompting me to do likewise) they have come back and said they don't feel an assessment is necessary right now for me based on the available evidence. Which has been a real gut punch as I feel I had just accepted the possibility that there may be something more going on with my brain than just my personality.

I struggle with transitions, and trying to take my brain from going down the pathway to now not is proving really challenging. I am slightly concerned that my Mum, through no fault of her own may have filled in the questionnaire with a more masked version of my behaviour in mind, simply because I don't tend to be completely myself even around family. Equally, it may just be that I don't fit the criteria and have to accept that.

I have been offered the opportunity to provide further evidence, and I wonder if sending a statement from myself and one from my wife outlining some of the ways I feel the potential traits I exhibit affect my day-to-day life and would help give the RTC provider more context? Has anyone else had any experience on this front? I'm not sure my best course of action, or if I should just be abandoning the whole thing?

It's funny, I wasn't bothered about a diagnosis for years, despite the urging of a few friends and family who suggested it might be worth pursuing and would explain a lot, and now it feels like it's hit me like a tonne of bricks that this may not be the correct route for me. I know it shouldn't, but somehow it has. Unexpectedly. 

Sorry for the rant, just not great at processing stuff like this, and appreciate it's just an email, I probably shouldn't be getting so wound up about it when other people have far bigger challenges in front of them. 

I think that’s the correct approach to take. As well as the fact it’s kind of widely accepted neurodivergence is usually hereditary. So much that after my kids got there’s, I went back to my Dr to try and get a diagnosis again, 5 years after he told me it wouldn’t matter because I wouldn’t get any benefits if I was and rejected my application and he completely changed after their diagnosis’s. 
 

Also they may want a parent or sibling to do that, but a partner will probably be able to give a better and more honest assessment than your parents can as an adult. Although for similar reasons to you, when I was getting assessed my wife was my reference and I was my brothers.

[TibBo]

@BomberPat Would they need to know what the survey was for? Or would it be obvious what it was for from the questions? I've never had to fill anything in like that, but could you just tell your dad it was for work or something and everyone has to do it? 

I imagine filling it in yourself is more likely going to taint some of the answers in one way or another, which is why they need someone impartial to do it? 

[Statto]

@BomberPat posed your situation to my wife who conducts ADHD & autism assessments (she also has an ADHD diagnosis herself, but not an autism one) as part of her job role.

Her initial thoughts were:

- definitely not unheard of for someone of your age to not have someone who can provide that input

- "They could tell them they don’t have support from family and they might offer them to get the next best person" (although it seems you're having trouble getting contact with them)

I then asked if it'd be a challenge for her as an assessor to do a rounded assessment without that input and she said:

- "It’s kind of silly that there needs to be that input but it’s part of the criteria. I didn't have anyone for ADHD though which is the same"

Hope that's in some way helpful.

[Hannibal Scorch]

sorry to hear that. All I can suggest is

1. Right to Choose

2. Get a private diagnosis 

3. A therapist who specialises in neurodiversity.

But getting a diagnosis won’t change things over night. It may give you access to meds, but that alone won’t do everything. Also worth seeing what books are available at the local library. More useful than relying on “Internet creators”

[BomberPat]

I would second Right to Choose; my GP recommended that route, and it got my waiting time down from something like four years to a couple of months for the first appointment. 


I just had my assessment yesterday. I eventually bit the bullet and sent my Dad a message explaining the situation, how I felt about it, and asked if he and/or my Mother could complete the informant questionairre, and they did it. The person I spoke to remarked on how little detail he had gone into and how blunt he was, which didn't surprise me at all; he didn't have much to say about early development and adjustment, but did comment that there were times that he and my Mam had considered whether or not I might be "on the spectrum", and added that they believed my step-brother was; typically attentive there, as I don't actually have step-brothers, I have half-brothers, but it was interesting to know. I don't speak to one of those brothers, haven't for years, and I suspect that's the one he's speculating about, as they admitted he's never had any kind of diagnosis.

I found the whole thing quite stressful. One of the things I really struggle with is repetition, I get very stressed out and sometimes angry if I have to repeat myself, and there were points when I was asked a question about communication, and in my answer I talked about how I find small talk really difficult, and then two questions later would be something like "how do you feel about small talk?", which feels like not being listened to, and I never know how much to repeat or whether it's okay to just flat out say I already talked about that. It's a bit of a cliché to say that finding fault with the diagnosis criteria and stressing out over the wording of the questions in an autism questionnaire is probably sufficient proof of autism, though!

They phoned back just now to say that they believe I meet the criteria for autism diagnosis, and that I will receive a full report in a couple of weeks. It feels slightly odd at this stage in my life to have a new label to put on myself, but I think after everything that has gone into this, I would have found it harder if they said I didn't meet the criteria - as much as it would still have been an answer, it would have felt in the moment like it had all been a lot of work for nothing.

[Hannibal Scorch]

It’s weird to congratulate someone when they find out they’ve been neurodivergent all their life but only just finding out they’ve actually are. But congratulations @BomberPat

[BomberPat]

Thank you - it does feel a bit of a weight off my shoulders.

By complete coincidence, the day I got the diagnosis I was meeting a close friend of twenty years or so, one of the only people who has consistently known me that whole time and stayed in touch. He's got a kid on the way, so we were both in kind of reflective mood and talking about how we were when we were younger, and that coming off the back of a diagnosis was really helpful and instructive. What became clear is that I have no temptation to dwell on "What If?", or to think if anything in my life could have been better or different if I had been diagnosed earlier - I genuinely don't think it would have made much difference, but even if it would, you'd drive yourself mad thinking about it - but it has been useful to just reassess my behaviour or relationships from when I was younger. Though even then, how do you decide which bad reading of a situation was autism and which was being young and stupid? 

[DavidB6937]

I feel like that's what I want - just at least the 'yes, you are xyz..' - but at the same time I'm quite scared of being told I don't fit the criteria and then being left in a weird confused state.

[Chest Rockwell]

My daughter has just received an ADHD diagnosis. The Dr is keen to medicate. I am feeling apprehensive. Has anyone got any experience of this / good reading materials they can share? 

Thanks

[deathrey]

I can understand you feeling apprehensive. She's still under 10 isn't she? Anecdotally I know a lot of women who are on medication for ADHD and have found it life changing, it's a route I'm currently trying to go down too. I think getting the dose right can be tricky so there is some trial and error till you hit the sweet spot and that obviously varies from person to person.

How is your daughter coping at the moment and have you spoken to her about how she feels regarding medication? (If she's able to understand).

Puberty is pretty brutal for girls, puberty with ADHD is doubly brutal, I would bare this in mind when deciding what route to take. Teenage onset of depression and/or anxiety (due to dopamine issues - so biological issues essentially) is incredibly high, 80% of children that have ADHD experience depression or/and anxiety as teenagers. This can have a knock on effect to things like school attendance, self harm, and long term self esteem. Medication can help mitigate some of that. As parents I would be on the lookout for signs of this and try to put as much in place to support her as early as possible if you choose not to medicated. 

I realise I'm probably just giving you more things to think about rather than an answer. Sadly there isn't a ton of research out here on the matter, particularly when it comes to females as they are chronically under diagnosed. Would they be looking at putting her on a stimulant like Ritalin or a non-stimulant like atomoxetine? Non-stimulants often work better for females as Estrogen can interfere with the bioavailability of stimulants. I think if they are looking to medicated as a parent, I'd want to make sure they explore the non-stimulant route first