What if the assessment says I'm not autistic?

[AuADHD]

I don't know how I'll cope with that. I don't know what else it could be because reading about autism and adhd was like all the tumblers on a massive slot machine falling into place one by one and many bells going off. An overwhelming mental image there 🥴
I've spent the past 5 years or so believing that autism and adhd explain everything about my life. But what if the assessor says she doesn't think I meet the criteria? My assessments are this month and I am very anxious that I'll just be diagnosed as a broken maladapted human who has failed at life and relationships through my own fault and flaws. My sense of self would be destroyed.
I'm being assessed through the right to choose.
I scored 16/18 on the self adhd assessment and 8/10 on the autism self assessment for the company who is doing my assessments.
I've waited for years for these assessments and feel like cancelling due to fear I'm not autistic or adhd and just broken or have a personality disorder.

Pfft. Football. Boring as it gets to me. I like motorbike racing.

I’m pondering why today feels more of a deal than when I got the phone call. I think it’s because I work better with written information than verbal. Seeing something in black and white is a lot more striking I think. It is for me anyway. I can’t misunderstand what someone is saying as easily when it’s written down. I felt the same with the ADHD report. That one was so negative though. Both reports are quite damning of the system I grew up in and I feel sad about that. I’ll feel angry later no doubt but today I feel sad. I wouldn’t mind so much but there were so many professionals and opportunities for someone to say hang on, could it be more than depression and anxiety? Could it be more than being a difficult teenager?
One thing I thought today was that I’d forgive myself for all the times I messed up socially. Relationship fuck ups might take more work because they’re complicated by being mainly abusive in some way. I was obviously a target for abusive men throughout my life.
My autism and adhd is why I struggled so much. The report states I have rigid black and white thinking. No shit Sherlock. People don’t like inflexible people. The black and white thinking makes me judgemental but I’m not in judging the person in a personal way. It’s hard to explain.
A positive is that my diagnoses give weight to ds being assessed. They will hopefully take it more seriously now. Dear Lord he has been all over the place this half term. Tomorrow we are spending the day building Lego and watching Disney movies.
My thoughts are a bit chaotic and I’m so tired tonight but I just want to say a big thank you to all of you for being here. It means a great deal to me. The kindness of strangers and all that.

Same auadhd
Get some sleep and process more each day.
Much easier to chat with others on here than a DH who is clueless.
Good to know we are not alone and I also presumed a diagnosis as I feel my ds is ASD and DD is ADHD.

This is how I feel about walking.

I know people that say they love to walk. In my head I just see walking as a form of transport so its not interesting one way or another, just like sport doesn't seem remotely interesting to me as a competitive thing because it just feels like a choice of fitness. I can't understand how people get so fanatical about watching people kick a ball round, and cant understand why others enjoy walking for fun.

That said, I like walking in December. Really specifically December and after 6pm.

I love the frosted leaf litter on the ground, it looks like millions of little jewels in the street lights. It's almost always foggy most December nights, people put their christmas lights up and they have this amazing glowing aura in the fog, and it's about the only time of year I dont overheat when I'm out and about wearing a coat or a jacket.

Logically I could put 2 and 2 together and see that different people find all the other months and times of day interesting to walk, but it just seems like Decembers are really special for walking to me, and every other time is just so mundane it makes it really hard for me to understand how they don't get bored of it.

Jimmyneutronsforehead I do like a walk and even more since COVID when it was our only escape.
I now have to walk 3 miles per day due to my job location.admittedly it is v picturesque.I see a river calves lambs herons squirrels rabbits etc.As I have ADHD it gives me time to sort my head out.Also I love plants trees and animals.It also keeps me fit and I'm a similar size to what I was 40 yrs ago.

I agree about a Christmas light walk.🎄🎄

I miss walking, I used to walk miles a day but now I have ME/CFS (diagnosed before the Autism so might be burnout) and am largely housebound.
I used to put beat-heavy music on my Walkman/MP3 player/iPod/phone and speedwalk the urban bits of the walk, then enjoy the loud silence of the countryside bits.
I suppose whether walking is boring depends on where you are and why you’re walking. I walked to get away from the tedium of being indoors, not to get anywhere, so it was an activity in itself.
I like to smell the new seasons, especially the first day of the new season smell. Winter is a fresh icy crispness. Spring is an intensely green soily smell. Summer is a dusty warm smell (with petrichor which is lovely in itself). Autumn smells rich and loamy, a nice brown smell of decaying leaves.
I don’t enjoy walking groups though (way too socially exhausting to add physical exertion to), or treadmills at the gym (you don’t even get anywhere!).

I've been wondering if I have CFS or burnout.

For the past year, even the walk to school which is 2 small streets over takes it out of me. I end up laying in bed fighting a nap for hours, and then when DS is back from school and needs someone to really keep an eye on him I get these fatigue attacks where I just zone out from forcing myself awake. I look like I'm not paying attention and it's got me in some sticky situations. Luckily live with other adults so we are both looked after.

At night though I have the worst insomnia and DS is autistic too and doesn't sleep well.

I checked my NHS notes and I've submitted 5 e-consult forms over the past year asking to talk to someone about my fatigue and they've asked me about my other symptoms and sent me for various blood tests, told me all is fine except my vitamin D is mildly low which I take a daily vitamin for. If I go out anywhere in a car, and the drive is longer than 20 minutes I am out like a light bulb. Thank goodness I'm a passenger.

This all started with workplace stress last year where I ended up taking time off, and being harassed by my workplace for regular updates when I said I just needed time to rest and all these meetings were actually causing more stress and making it worse but they insisted they were a necessary step. I ended up quitting.

It's really hard to place whether it is CFS and I should chase it more, or burnout. I think my doctor would say it is burnout, but it isn't like they can do much if they say it is CFS anyway. Also, there's been that many bouts of covid, I don't know if it is postviral. We get a lot of bugs in our house. We don't test any more, so hard to know.

I do think as autistic ADHDers we need to prioritise our health, and that is going to look like we're being really stubborn and inflexible but I'm learning that it's OK to be stubborn and inflexible. I just laugh it off saying I'm a May born Taurus if anyone complains.

Dd was annoyed at me that I’m always tired. I am always tired especially by the time it’s 9pm but this was 10.30pm and after spending all day with probably adhd Ds I wanted to be on my own in bed to decompress.
Every job I’ve ever had within 2 weeks I’m no longer loving it and feeling exhausted even if I like the job itself. The nurse at school told me it’s not normal to be thinking at 8am that in 12 hours I can go back to bed. I’ve always looked forward to bedtime and never have enough sleep even if I sleep for 11 hours.

This is one of the reasons why I left work.

I always thought I just had poor work ethic. Genuinely struggled to like a job nevermind love it.

Always too exhausted to meet arbitrary targets, always getting in bother for not doing enough when I was giving more energy than everybody else and getting there half as fast. Systems changing. Policies changing. Procedures changing. Being shamed for not being able to break away from what I know. Getting disciplinaries. Capability hearings even though I was slow, I had the best success rate in % terms. Needing 30 minutes between most consultations where most people took 5-10.

Eventually left me in a really dark spot. I'll not go into the details but I was declared not fit to work, did the LWCRA assessment, applied for pip, didn't expect to get anywhere but the evidence I had provided was in their eyes substantial, and was awarded PIP.

I think its only after I went down these routes that I actually realised how disabled I actually am by being autistic. I can't leave the house without a chaperone for example. For the longest time it felt like a choice I chose for convenience but it all sunk in that it wasn't a choice just out of convenience but out of necessity and comfort once I dissected the why of not being comfortable leaving the house without someone, and suddenly my family being able to open up to me like "you were a nightmare getting to school, if the bus was late or early you would just come home or if there was a deviation you'd get the school staff to ring us to collect you" and the dots started being connected.

Basically because of black and white thinking, I thought well I am physically capable of getting on a bus, I can mechanically make my arms and legs move and step onto a bus so therefore I should be able to get on a bus and go to work I powered through for almost 30 years when I can't do those things like other people, and it's not normal to have so much stress at the end of the day from these non-events that you peel the skin off your feet in long strips that get deeper and deeper until you can't walk, or pull your hair out so you've got bald spots, or your throat to squeeze so tightly your epiglottis cramps up, and by 5pm you feel like you've used your word count allowance up for the day.

I'm in a place now where because I am out of work, and I'm a lot less stressed, I am questioning again whether I am genuinely autistic because it's been a while since my struggles have been so extreme, and sometimes I fall for the things ableist people say, and then I push myself again and realise that I am in fact still disabled.

I am trying to set up a small business, but that requires networking which is a big hurdle for me. Even social media posts to promote are a hard task. I also worry I might not be able to keep up the pace enough to make a business sustainable so even though I have everything I need to start, I just can't get there.

I realise not everyone is in a position to take sick leave for burnout and on mumsnet especially there can be this mantra of if your arms and legs aren't dangling off then you should 100% go into work and not inconvenience your workplace or colleagues, but if you are in a position to take some time off and you need it, then I would. You've already said it's impacting your relationship with your child, and your health should always come first.

Sorry that you have struggled so much Jimmyneutronsforehead.

Thank you. I am struggling a lot less now and do live with family so I am always supported. I think my struggles are sadly quite common for late diagnosed folk, which is overall pretty sad, so on threads about children being undiagnosed and misunderstood you'll probably see me advocating a lot for the diagnostic pathway. I am so grateful though that more people are being diagnosed even if it's later in life though even though the system is long and arduous in a lot of places.

Did a little clap of joy when OP came back to say she'd received her diagnosis. Was over the moon.

Just wanted to come back and let you know OP that next friday I've got a post-diagnostic support appointment.

A whole 14 months after diagnosis!

Still grateful because many would still be waiting for an assessment in that time frame in some areas.

Anyway, I was just letting you know because whatever the post diagnostic support they offer might be of interest to you too.

When she rang me today to ask if I was still interested, she said it's to discuss my particular flavour of autism (my words not hers exactly) and I told her to bring her reading glasses because boy oh boy have I got a book to bring.

But yes, if you'd like to know what they ask or what they can offer, I would be happy to share it with you and let you know when it's all over.

Auadhd I got my results today.
I started off positive but tbh had I read this as a youngster I would think I was screwed
Pretty hard going.
She did say I was friendly engaging and well kempt though.🤣🤣😭

Jimmyneutronsforehead good luck with that.

Good afternoon, I've had my appointment and if you are recommended these appointments as post diagnostic support I do really recommend them.

Ahead of time I took a list of my struggles with me and brought plenty of examples with me from sensory issues, which for me focused mainly on poor interception. Things like feeling too hot even in winter, not feeling hungry until my body is in crisis mode but also not feeling full until I am fit to burst, not receiving cues from my body that I need to go to the toilet until it is a matter or urgency frequently leading to accidents.

We also discussed my work (when I worked), if I'd like to work again, what went wrong in workplaces, access to local and national autism employment agencies and advocacy services. My local one was in Sheffield called Beyond Boundaries, I think she said. I explained I am looking to become self employed but I'm barely holding life together at the moment so it feels like a distant dream right now.

We discussed the support I receive at home but equally the support I feel I need but do not have access to, which lead to the discussion of being referred for a social care assessment. This sounded scary at first because I haven't really ever wanted social care involvement but when everything is laid out on paper I am really really struggling. I was reassured that I didn't have to accept their help but I could have the assessment which I'm legally entitled to and take it from there. I live with an aging grandparent so at some point I will need this help so it makes sense for me to accept it.

We also discussed our local safe space initiative, the autism card you can get for police interaction, sensory profiling, and a health passport for the GP and the hospital as well.

I will be offered another session where we will focus on interoceptive work to try and better remain regulated before I reach crisis mode.

Overall, it was worthwhile going to this appointment and accepting the post diagnostic support.

They do also offer support with PIP and LWCRA but as I'm already in receipt of these benefits we had no need to go into it, but knowing it is support they can offer might help you.

How is everyone doing?

I'm doing so well, and I was actually thinking about this thread earlier! Hope you're doing well too.

Since my first OT appointment a few months back over 12 months after diagnosis, I've since had a second one, where I was referred for a social care assessment, which I had today to discuss supported living and acquiring a PA, and support to set up my own business.

I've another OT coming up at the end of August for an official dyspraxia screening.

I had a physio appointment yesterday where I told them about my dyspraxia screening coming up and really needed my extremely obviously and already medically noted hypermobility officially diagnosing, so the ball has gotten rolling for that. It's important it's documented properly because it could impact the outcome of the dyspraxia screening, although it is possible to have dyspraxia and hypermobility at the same time.

It feels absurd to me that suddenly after getting an autism diagnosis, other medical professionals are much more willing to take my concerns for other diagnoses extremely seriously, whereas before they wouldn't entertain the ideas, was sent on my merry way with some exercise bands.

But suddenly everything is going in the right direction, and none of it would if I hadn't gone to the first occupational therapy appointment.

Also my son has been approved for specialist provision which has been a huge stress over the past 2 years for us! Still awaiting placement, but half the battle over.

So I hope everything is going well for everyone else too.

I haven’t commented on here for ages, but I finally have an assessment review for my ADHD diagnosis after I chased up about what my previous results would mean in terms of adaptations and support.
I scored highly for adult ADHD symptoms (well above the threshold score) but have an inconclusive result because I have no childhood evidence. My mum lost all my school reports and can’t remember anything about my childhood as my sister took a lot of attention and I stayed below the radar.
Today’s reassessment is to try to get into any of my own childhood memories from the 1980s and see if those shed any light on my childhood symptoms.

How did it go?

I think it went well, the assessor’s tone was much more friendly and we talked about what I remembered about my childhood. I’m still baffled how I would personally know if I speak at the wrong time in a conversation. I probably do, but surely it’s ruder to point it out than to do it in the first place?

I asked my assessor for examples, and a good one she asked is do I ever finish anyone's sentences?

I do, quite often. But I am also autistic so I don't necessarily pick up on the fact that others find it annoying or rude. I also often get the ends of the sentences wrong, and they end up correcting me or going with the flow.

A bit like that song from frozen, where they say

You know it's crazy, we finish each other's

SANDWICHES

That's what I was gonna say!

It's a demonstrable way of showing that you have to get your words out as soon as they form because of how you process language and communication, and how impulsively it happens and if you don't get it out then, you'll forget it.

For example I often start speaking in a conversation before the other person has actually finished, so often there’s a point where two of us are speaking at the same time. I find it hard to work out when I can say something, or if in a group conversation I’ll think of something that I want to say but can’t find a time to say it so wait a while, then the conversation moves on and sometimes I say it right at the end and it doesn’t make sense.

I do think getting a diagnosis or not is a huge thing - and should be such a long in-depth process. Im an autism and adhd assessor and ours take 3-4 hours with the client (but we spread it out if necessary as most neurodiverse people couldn't cope with that) - we encourage breaks, and turning camera off if needs be if eye contact is getting too much which is often the case. We always do a post report follow up appointment so we can go through it with clients and explain everything, and deal with any concerns or queries. I feel strongly that assessors who aren't doing this aren't appreciating the deep affect going through such a process takes on someone. Im neurodiverse myself and I found it draining and confronting, and quite traumatic at times.

Ive found people who don't get the diagnosis can be devastated, as much as people who do. Often its mixed emotions.

I was told 11 years ago that I was borderline, so they decided I wasn’t autistic. It was devastating. I’m hoping that 11 years of understanding women’s presentation of autism will mean I will get a diagnosis if I try again. My therapist also thinks I have ADHD so I’ll try and get both.

Floweruser My advice would be go through an assessment service like mine that specialises in female autism and adhd only. All the assessors on our team are women who are either neurodiverse or have neurodiversity in the family - and have extensive knowledge around female autism. Understanding of the female presentation is growing but sadly most practitioners are pretty clueless still. The ADOS-2 is still very male centric, so you need assessors who get that otherwise there is so much misdiagnosis or missed diagnosis. I should know it took me til i was 47!!