Late diagnosed ASD and ADHD AMA

[Cloudbow]

Given all the discussions and opinions on late diagnosis of ND, I thought this might be an interesting AMA for some people.

I got a diagnosis of ASD and ADHD in my mid 30s, private not NHS.

I’ve name changed for this so as not to be outing. AMA and I’ll answer as best I can.

Has your diagnosis made any difference (positive or negative) to your life?

I was diagnosed with ADHD this year, at the age of 52.

Yes it has, mainly positive. It’s helped me to be a bit kinder to myself when I struggle with something or can’t do something like others can, and understanding why has helped hugely. It’s also helped my relationship with DH as there’s a reason why I am how I am and he knows I’m not being like this on purpose. I am sad though that my life probably would have been different had I been diagnosed as a child and had support.

@Fireflies73 has it made a difference to you?

Can you tell us what led you to seek diagnosis? What kind of things do you find difficult? How was it growing up as a child?

Quite honestly my childhood was difficult. I was the awkward child in class who didn’t really fit in, wierd, often didn’t play with anyone in the playground, got bullied. I was clever and could get good grades but I didn’t do any work for subjects I wasn’t interested in. My parents didn’t understand me and I was shouted at a lot at home so I kept to myself a lot. I refused school a couple of times a week for a couple of school years. I self harmed as a teenager for a number of years. Despite that I did have some really good friends in school, which saved it a bit.

I wanted assessment as it’s always some the big that’s Naren mentioned about me over the years by my friends and DH. There’s a lot of things I struggle with and it was putting a strain on my relationship, especially since we had DCs, and I wanted to know for certain and to have that understanding of myself and for others.

Do you take medication now?

I struggle with lots of things, but f you don’t know me well you might not guess, apart from thinking I’m a bit socially awkward. I can’t do new social situations easily, I have no idea what to say to people and small talk is beyond me. Having a coffee for example one on one with someone, unless they are a very good friend, is awful for me and I try to avoid situations like that. I’m much better in small groups where I know at least one other person as I can then join in a conversation when I can and is less pressure. I stim and so spend a lot of effort making sure I don’t stim noticibly around people. I struggle with crowded and loud places. And with the noise and touching out from my DCs which is difficult to admit. I get overwhelmed a lot. I also struggle with starting tasks and getting things done like housework, eating or drinking, transitioning so like getting into the shower or having a drink or getting out of the car.

No, I have the option of it but haven’t at tried it, I’m a bit scared because I have ASD and am worried those traits may get worse or more apparent

My dh wants to go for assessment to see if a) he has a diagnosis b) if the medication might help. How does ASD not tie in with the medicines? How does ASD manifest itself. Thanks for answering!

There is no medication for ASD, it’s for ADHD. As I have both, I have traits for each and some overlapping traits. There are some thoughts that having the ADHD medication may lessen some of the ADHD symptoms, and in balance may heighten some of the ASD symptoms. In not sure if it’s true or not and would have to see with experience, but I find life hugely stressful anyway and I’m not really coping with everything at the moment anyway and I’m not sure I could take an unbalance in this currently. My plan is to wait for things to settle down and DCs to get a bit older then explore medication.

Did you have to have a parent involvement in the diagnosis process, I think might have asd but one parent is completely absent and the other has really poor memory.

No, my parents weren’t involved in it. For a few reasons I haven’t even told them. You can use anyone who has known you a long time it doesn’t have to be family. My DH was my informant and I answered the childhood questions.

Were you diagnosed with any other conditions prior to AuDHD?
I have read about things like EUPD actually being ASD and/or ADHD, especially in women.

Hope this doesn't count as a ghost thread! Would love to hear your experience.

How was it going through the NHS if you did this diagnosis route? Were you made to feel you were wasting anyone's time or was it hard to convince the GP it was worth a referral?

What does stimming look like for you?

How are you coping atm unmedicated, do you have any good systems or tricks for managing ADHD?

Were you previously diagnosed with anything comorbid or misdiagnosed like anxiety?

Whole rest of my family is diagnosed AuDHD (well one is in the process of ADHD assessment, has already been diagnosed ASD but it's extremely likely) and I'm coming round to the idea I may be ND, may have both.

I went private as I get private healthcare through work. I had thought about going NHS but the idea of trying to get an appointment for myself then actually talking to a GP about all this was too much for me. I get quite bad blocks on things, for example I’m very overdue for a car service, opticians appointment and health check up for a condition, I know I need to sort these but I can’t.

Stimming has always been quite a big thing for me, I have lots of stims, but the most common for me currently are bouncing my leg, pacing, fiddling with my hair, scratching my arm, picking skin on my lips and fingers. I can often stop stimming if I catch myself doing it, but I have to concentrate on it and tell myself not to. And when I’m too stressed I can’t, like in my face to face interview for assessment I came out with my arm so scratched up it was bleeding. At school I was badly bullied for things that I now know were stims.

Being I medicated I guess I’m coping as well as I always have, or haven’t, throughout my life. On the surface I appear to cope well as I hold down a good job, have DH and DC, friends, but actually my life’s a mess, house is a mess, I spend most of my time anxious, have to catch up with work at night because I haven’t manger during the day, appointments way overdue, struggle with sleep, overwhelmed with kids and end up having meltdown and have to get away for a bit. At the moment I’m working on trying to schedule in quiet time to myself to try and manage overwhelm more, so have bought extra leave and am using this to have duvet days by myself, not feeling guilty about booking an extra last minute breakfast or holiday club if I need some space, having an evening off parenting occasionally if I need it.

I’ve been diagnosed with depression and anxiety before, and have EDS which is common with ASD.

I’ve never been diagnosed with EUPD, but I have been diagnosed with depression and anxiety previously.

Could you say more about how it has helped your relationship?

Thank you for thread @Cloudbow I identify with some of your story and it's very thought provoking.

I will come back with a question but I'm jumping in to share the experience of ADHD medication (methylphenidate) of my 12yo in case that's in any way helpful. I hope that's ok.

My child was diagnosed with ADHD, and later ASD as well, during primary school.

Very low doses of their ADHD medication are available and there are short and longer acting versions. We have always had the short acting version.

Before beginning medication I was aware of potential unhelpful side effects, to give an example: an unhelpful effect on appetite when there are already challenges around ensuring sufficient nutritional intake.

I can see that the effects of the medication are subtle but helpful. A morning dose is clearly out of the system by lunchtime and there are no intrinsic problems if a dose needs to be missed (eg if unwell) the next one works as usual, there are no negative 'medical' effects of stopping or restarting.

This means a recent increase in dose (due to growth) could be tried for one or two doses to see of there were any problems. We have had two different 'brands' of the same medication from the pharmacy over the years and found one suits better than the other. I don't know why that is but the pharmacy are happy to stick with the one that works better for us now.

I am saying this to let you know that if and when you decide on a medication trial if may be possible to do so in a very low risk way and stop easily after one or two doses if you found any ill effects.

An example of the interaction between ASD and the effects of ADHD medication - from my observation so could be rubbish! : If DC is anxious about X, which I see as ASD related anxiety, the medication doesn't directly reduce the anxiety but could enable DC to focus better on strategies which make X less worrying. So the overall effect is helpful but still involves using other strategies and doesn't make a dramatic change so much as tilting the scales slightly in DCs favour if you see what I mean.

Do you think in the future we won’t bother with diagnosis and go on need instead?
Rather than trying to separate traits of ASD from ADHD, not to mention impact of trauma, if there’s any learning disability or anything else at play?
Do you feel there’s a kind of snobbery which comes from late diagnosed high functioning adults and working class kids with ADHD and a learning disabilities as a comorbidity?