My autism assessment & referral || Talking through my experience
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- Опубліковано 28 сер 2024
- Talking through my entire experience of being referred and assessed for ASD and as my experience as a woman with ASD. I got referred through my GP on the NHS, first for an ADHD assessment, and then got put on the waiting list for Autism Spectrum Disorder, and I had my assessment last week at St. Georges Park in Morpeth.
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Thank you for this video it was really helpful. I just went to the GP today to have have an initial assessment and I’m now waiting to see if they will refer me . I’m the same as you where I’ve heard so many horror stories of people having horrible experiences with diagnosis and getting in touch with the GP regarding mental health issues in general, it really is a shame. But you’re honestly doing the lords work discussing this topic as there are barely any other videos on it, this helped me get my anxiety down and even brought a couple of tears to my eyes. Not only because of the hope it gave me but also how similar my situation is to yours, being in someone who is a young adult and can outwardly present themselves quite well and has learned to cope with a lot of things growing up.. I also come from a single parent immigrant family and my mum has always been extremely dismissive of this matter. You are also so beautiful and nice to listen to, thank you again as I’m sure you’ve helped many others just like myself with this. Best of luck on your future NHS journeys if it is to continue and best of luck to all of us in this comment section as I’m sure some will be needing it 💓
I'm so glad you found this helpful, and thank you so much for commenting. I hope your diagnosis goes as smoothly as mine did, hopefully a bit quicker though 😅 Always know you're valid in knowing how you feel and how your brain works, even if others don't see it 🖤
For everyone who wants referrals you can get an NHS referral but ALSO using "right to choose" you can get a referral to a private place and your GP send both off. The NHS one i got sent and private was sent same time. The NHS quote i got waa 4 years waiting. Clinical partners which is who i used my right to choose for an additional referral said 9 months. You can even call the pvt place like i did to check if the referral was accepted.
I had a similar experience of being told I was referred to a waiting list when I actually wasn’t - so 2 1/2 years later I found out from a new gp that I wasn’t on any list… How are they actually allowed to just straight up lie?😅😭
Ah, I'm so sorry, that sucks! I honestly think sometimes its just a mistake from the doctor or from the forms, but that little mistake can impacts peoples lives so much. Hope you got your assessment or have it soon!!
I'm going to contact my GP again because I'm concerned that my referral didn't go through. I'm hearing a lot of cases of this happening and because my GP was hesitant to refer me because "it wouldn't benefit you as you're no longer at school age", I'm getting worried ^^'
Shit i have been waiting for 2 years in april.. i need to check again if im actually on the list. I do live in a city so i think there are more people on the lists here. So fed up of waiting after a lifetime of suffering. It helps reading others comments
Normally you get a letter confirming you're on the waiting list. If you don't get any letter then you need to call and check. I waited 8 months thinking I was on the list but ended up calling to double check. Had another little chat with my GP and she said she was referring me. I got the confirmation about 1 month later. Now waiting...
Didn’t realise how lucky I was… living in Australia my wait was almost non existent! I got assessed by my physiatrist straight away 😳 I am SO SORRY you had to wait that long I can’t even imagine!!!
I love hearing you got through quick though! Hope it all went well for you!
The NHS in the UK is being systematically under-resourced so that it under performs and the right-wing government can justify bringing in more and more private sector involvement (and thus, rewarding their donors).
I’m about to get assessed and I can completely agree ( I am a minor so it is a bit easier) the psychiatrist seem to be so much more informed on neurodivergence for me (my psychiatrist also had adhd and autism so that also made it easier) and we just had to book a paediatrician though it was expensive and ask them to do a screening, I’m just about to get my offical diagnosis
You described what I call research mode!!!!.... I love research mode 😂😂 and I'm sooooo not a hugger 😂 my list is already convincing me what my outcome is going to be because I didn't know what autism was at all until that GP appointment and every day I learn something new about myself and my past it's like having a constant flow of light bulb moments 😂
Thank you so much for sharing this. The detailed explanation is really useful. It was a long wait for you - I am glad you got the diagnosis in the end 💗
I'm so glad you found it useful, thank you so much for commenting 🖤
Hey! Thank you so much for making this video. I've been waiting 9 months so far (scottish NHS). I spend all my spare time preparing. Thanks again!
It's no problem, I hope you found it useful! Best of luck with your waiting time and assessment 🖤
My ASD assessment is coming up this month and next month. I'm nervous. Thank you for this video.🙂
So glad it helped and I wish you the best of luck with it, I hope it goes as well as mine did 🖤🖤
i have mine next month! i am so scared
@@ellaaa.jane1 I was very nervous, too, but the assessors were both very understanding and patient, and I got my ASD diagnosis, so it was all worth it in the end. Good luck, let us know how you do.🙂
@@vanishingpoint2658did you get it through the post or got told on the day?
My daughter has waited for nearly 6 years! Finally has her appointment at the beginning of October. Being a young teenager, I'm not sure if the assessment will be exactly the same experience as yours, but I hope it goes as well as yours did. Thank you for all your info x
Has your daughter been tested yet? If so how is the process. I’m also a young teen and waiting for an assessment.
I have my first part of my assessment at 2:30 today but it's over video call as the NHS put me through a private clinic to cut waiting times, I am so incredibly nervous. My mind gets so busy and I get so anxious that when I'm asked questions - my mind goes completely blank. Really hope I don't forget/miss things that help get my points/struggles across. Thank you so much for the video it's putting me at ease
I hope it went well!! So glad the video helped 🖤
I'm from Northumberland too and have been on the wait list for my ASD assessment for 17 months now. It said a 6 month wait when I was put on, then it stated 12 months in an update letter and now it's been 17. I'm dying to just get it over and done with.
Saving this to watch in more detail tomorrow!
Thanks for this!
Yeah, it's such a long time, so sorry its taking so long for you as well! I hope you get the same lady as I did because she was honestly just so lovely
@@sarahlwalden Well that is encouraging! I'm really worried I get someone who will interrogate me and try their hardest to oppose all of my points.
I've come back to watch this again as my appointment is this month! I'm shitting myself haha, but how you explained St George's was brilliant! Thank you!
Feel your pain!
@@UnderToWonder exactly how i feel
I went to the Doctors like 10 years ago and they just said anxiety. Even though I hinted at autism. Plucked up the courage 6ish years ago and actually said I think it’s autism. She said sounds like social anxiety plus this area has not autism referrals in your area anyway. I feeling so low and just at a really low place and I don’t don’t see the point in anything. I’m to scared to call up again because as soon as I try to talk I will start crying and go into a meltdown
Please don't give up!
(Hope this helps).
I went through that too. I repeatedly brought it up to my former therapist for 5 months and got ZERO referral. So I googled different Autism Dr.'s near me and just started calling places myself. SMH. Until one place called me back and now I'm finally one step away from getting my diagnosis...So basically I had to become Sherlock Holmes and refer myself. 🫠😮💨
Thank you for making this because I'm 51 and after going to my GP already diagnosed with Anxiety and Depression I was asked if I wanted to speak to a mental health professional who had experience of working with autistic people after which I was reffered through my GP and put on the NHS waiting list in may 2023 and I'm guessing because I live in Ashington that I will be eventually having my assessment done at the same place as you did 😊
My assessment is in 2 weeks. I've been going through this process for a little over a year now using self pay cuz the American healthcare system isn't great and I didn't want to wait another 3 years since that's how long I already suspected I'm autistic. I just didn't have the resources to proceed in getting a diagnosis. I'm definitely feeling really anxious but hopefully I provided enough information for my assessment to go as smoothly as yours. 🤞
Respect to you Sarah 💜
REALLY WELL MADE AND INFORMATIVE VIDEO !!! You've got a talent there.... Really wish you all the best x
Thank you for making this helpful video. My daughter has her assessment tomorrow and is super anxious about it. Hearing your experience is reassuring. It’s been 18 months waiting and we’ve been in research mode the whole time!
I'm so glad you found it helpful, I hope her assessment went well!
Thanks. It was ok. She found it odd but not upsetting. We as parents found it frustrating as we still have no diagnosis and they refused to comment on how long it would take for them to collate their information. I guess we are kind of getting used to the epic timescales of these services.
@ChrisJakins aw, I’m so sorry. I know they like to have multiple assessors make the assessments usually, so perhaps they’re not sure when the next appointment will be. I’m glad your daughter didn’t find it upsetting
Just an update. We got her diagnosis today. ASD as we expected. Such a relief that we got there. Diagnosis is a privilege especially in the UK with the lack of resources across the nhs. We are all ok and ready to move forward.
@@ChrisJakins That's great, congratulations to your daughter! I hope things are smooth for you and your family and the diagnosis helps you all. Thank you so much for updating me! 🖤
Hi Sarah, I'm Simon and I'm a young looking 58 year old . I got my diagnosis for Autism 11 years ago , and I had a spell of depression from year to year . But as I was having problems at work, a senior manager managed to get me a referral, and a week later I got told I have Autism. But we must remember that people are born with the Autism, but some people think that you can catch Autism WHAT . Anyway Sarah please keep up with your videos on Autism. Can I suggest that you should get a Autism Alert Card from the National Autism Society , they are a life saver . Take Care . Simon x
You're not alone Sarah cause I'm autistic too
Sarah we love dont worry and I love watching your videos!! 💜💜
Thank you I'm awaiting an appointment, this is very helpful
Thank you for sharing a good experience (other than an insane waiting time!) X
Your assessment sounds so similar to mine :)
Hearing you had a huge wait is a bit disheartening. I was referred for an assessment earlier this year, can't believe the wait's that long. Writing down what you notice isn't the same for everyone's a really good idea, I'm gonna have to do that! Glad you got your diagnosis, I hope you get the support you need.
I think mine went on for so long because of the many complications I had, but hopefully, if you have no complications it should only be 1-2 years for you! I'm glad there was something useful in here for you! 🖤
Hi. Not sure if you will see this. I’m 44 and after going through referral and screening tests, I’ve been accepted for an assessment. The wait is three years. I’m not here to moan about that fact, I am a psychology degree student and I’m all too aware of the shortcomings in the UK health service, my point, or question, or experience is that I don’t feel better for getting this far…I don’t feel accepted or part of the autistic community. I suppose I’m asking what can you do if you can’t accept yourself as autistic? (The reasons being plentiful but mainly based on years of rejection and internal/external negativity).
I’m having an assessment for autism and it’s in 4-5 months 👍
How was it?
What did you score on the AQ 50?
I was diagnosed with ADHD 2 years ago. Since taking concerta my ADHD symptoms have significantly subsided. However, I have noticed more asd symptoms which had led to me being assessed for asd. Has anyone else experienced anything similar to mine?
Thanks for the video. You also sound like you live near me in Durham haha
I’m 34 recently diagnosed with adhd been on meds for 4 months and noticed the same I’m now waiting for autism assesment they said they have put me to the top of the list so hopefully won’t have to wait so long! A lot of things I never noticed before but have always been there x
Went through ADHD drug trialing, and once a therapeutic level dosage was found (seems likely am overdose) the funny observation is it emphasized my autistic inertia to the point where it woke me out of a drug-aided sleep to go back to work on my task.
So, there’s a fun data point for you 😂😂😂
What should I say to my hairdresser if I want colour like this one? I would need to bleach, and pink-shades with yellow.
Things sort of collapsed for me in 2019 when I was in Uni and I withdrew based on my health complications. I was referred to the adult autism referral under the NHS services, firstly the letter said it is a 12 month wait, the second letter apologised and said the wait is 24+ months, it is now 4 years later and I have still not heard anything…
Yeah, it is a ridiculous wait at the moment, there's just not enough money going into the NHS. Definitely chase them up though, email the email that's on your letter and ask for an update, keep putting pressure on them. Hope you hear from them soon 🖤
@@sarahlwalden Thanks for taking time to get back. That’s what I thought but wasn’t sure if other people are also waiting this long or maybe my file went “missing” somehow. I had also been waiting dor an ultrasound referral which never came, after 11 months I asked my gp about it and their response was:”Oh have you not been seen yet?” Which then followed months of waiting and ultrasounds and research, they had found two large cysts in my ovaries and for a moment thought it was cancer… it’s been a lot to chase up different things. And meanwhile being treated as if “I’m after something” while what I’ve wanted is checks on my health to determine what is going on exactly. At least there is now clarity about the cysts. Back to autism and adhd health management.
Thanks for sharing.
Thank you for watching 🖤
Thanks for sharing this, may i ask please what happens after someone is diagnosed with ASD?
Like for example if depression or psychosis you take an anti depressant or medication
But for ASD what happens after diagnosis ?
Nothing happens in regards to healthcare, there is no 'treatment' for Autism and the NHS doesn't provide counselling or anything like that
Why is it that there are, currently, 1096 views on this video, and yet only 54 likes?!?! How taxing can it be to tap or click a thumbs-up icon?! Come on, people, don't be so bloody unresponsive.
Hahahaha, thank you!! I really appreciate the engagement you've gave 🖤
Doctor referral ok
I've just had a letter refusing my referral for Autism Testing or whatever BANDS is, the letter is confusing me.. I've had refused to Even being referred as I was under the community mental health team who now Im discharged from 🤣 I've been diagnosed with BPD by a psychiatrist called Dr.Aziz who has a very short brain, clearly can't see what's my actual diagnosis and CBA actually working out what is going on.. my mum think I'm autistic - PDA Autism, and Schizophrenia as most of the time apparently I'm in fairy land, and always have been "Natasha Land" my birth name , as I talk to the things that aren't there - when I was little I used to have convosations with radiator, smoke alarms and other things, also I have smoke alarms & fans, filters in swimming pools and will not go near them!! Also my mum says I've had one certain "stim" which has always stayed, twiddling .y fingers Infront of my face with my hair (when I actually had long hair, now I do with hoodie tie things) and go cross-eyed .. can do that for a while like 15mins straight without stopping .. I've always in nursery/school reports being notied at shy, quiet.. socially withdrawn. And werid querks, and have obsessive things I like: like reading map books/geography, Tracy Beaker- actually thinking I was the characters..
What is a gp
What do you didn’t have to do the story telling and Mike?
I'm so sorry, I'm not sure what you mean!
Hello, befin using external regulation of emotion until its internalised. You will refain normal neurotransmitter levels. Fix fhd srimulation problems. Do the work and he autistic will gain any practice until internalized! You are alrady perfect, you beautiful, you are able to gain facial composure and be able fo use normal expressions. You hace to practice!
I don’t mean to be rude or mean but I couldn’t finish watching because your hands clapping so much was overstimulating my brain 😢
I'm on spetcrum waiting for 3 months for my autism assessment my gp have already referral to my GP now I have to go to autism hub while wait for autism assessment I have speech problems waiting for learning disability team to contact me when they found place to do my assessment also if I'm on the waiting list I have mental health problems mental illness I was autism the hold time my mum said but she has passed away last year on new years eve she has more information but my sister does my dad have to do autism assessment with me I have my speech and language skills my speech is unclear
I'm sorry for your loss. I hope your assessment comes soon!