Chapter 26 autism coaching and support: being ok with accepting help
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- Опубліковано 21 лип 2024
- Chapter 26 recapping my unexpected Autism and ADHD year: this week I'm looking at some of the support and coaching I personally received and the value having a tag team partner or guide can have in helping you through a late neurodivergent diagnosis.
Please do like and share this video and subscribe to my channel if you find any of it useful, or message me to get in touch and connect.
Contact email: amineurodivergent@gmail.com
Some useful links:
Where to find local autism support (UK):
www.nhs.uk/conditions/autism/...
www.autism.org.uk/directory
Hendrickx Associates: www.asperger-training.com
AQ Autism Self-Test:
I'm going to keep posting the link to the AQ Self Test for autism every Sunday in case this is the first video in the series people come across. Take the self test (remember it's JUST a self-test) and see how you score. You may have been on the autism spectrum all along and just had no idea, like I was:
psychology-tools.com/test/aut...
ADHD Self-Test:
(with all the same caveats as above) an ADHD self-test. ADHD is even MORE common than autism (and many of us will have both); the vast majority of ADHDers just struggle through from childhood through adulthood having no idea that they even HAVE ADHD, let alone working out strategies to cope and deal with it all better to be happier and less frustrated with ourselves and others.
psychology-tools.com/test/adu...
Do u hear the distant thunder its the sound of strength in numbers
get back on the horse that threw us and ride it like we stole it
Love it ❤❤❤❤❤❤❤❤❤❤
Thanks AIN , another great, insightful and practical video.
I don’t think I have the resources or the energy to embark on the diagnosis journey after a life time of ‘alternative diagnoses’ and gaslighting. For me your videos are invaluable and encouraging and maybe a talk with a suitably experienced ASD would support that journey, I don’t know.
Anybody in the West Yorkshire area in a similar situation or been through the NHS route here. ?
The waiting lists are very discouraging and my benefits/ soon to be pension are being diverted to long overdue dental treatment only available privately.
Its a question of priorities sometimes and I feel quite ok to accept I am probably neurodivergent because it explains so much of my life without an ‘expert’ opinion.
But it would be great to discuss this with others in my situation.
www.southwestyorkshire.nhs.uk/services/autism
www.autism.org.uk/directory/s/specialist-autismservices
www.wypartnership.co.uk/our-priorities/mental-health/autism
advonet.org.uk/services/yorkshire-autism-aim-mental-health-equity-project-yaamhep
Thank you !
My experience with my private diagnosis was similar: "Congratulations! You were right, you are autistic. So long, and thanks for all the fish (movie quote)". They told me that I didn't need to do anything, that I could live my life like I was doing before. It was brutal. I went there because of a major burnout, they basically told me "It's ok to have major burnout every 4 years or so, you are doing it great". There was another private practice with better reputation, but it was out of my budget by a large margin...
It seems that NHS has a good post-diagnosis support program (at least it has one). I live in Spain and I'm not sure if it's even worth it going to my GP to ask for reference for a diagnosis with Spain's NHS.
I really like your style and channel 🙂 I'm trying to catch up with this series.
Thanks for the compliment - I hope some of the other videos are useful also. That's partly why I'm trying to get my journey captured and recorded and out there, because at the moment there's very little support for late-diagnosis (hopefully that changes, and changes all over).
I think the 'going full on autistic' after diagnosis is a perfectly normal human reaction. Redressing a lifetime of masking imbalance. I'm sure it's not always true, but I think in most people this would even out over time as people find their own balance in their new reality. That's how it's been for me anyway.
Same - I definitely found myself significantly more flappy and talky-to-myself in the immediate aftermath of my diagnosis but kind of levelled out to somewhere in between over time.
Yes😊
As usual for your videos, your lived experience mirrors my own very closely and I thank you for sharing it. It'll help me make a list of experiences / "symptoms" to hand to my GP next time I see him.
Thanks James - hope your GP's listening to you better these days!
This is very timely. I seem to be in a permanent state of low-level anxiety pretty much whenever I have to do anything the last few weeks and can't figure out why. I have the first of 18 therapy sessions starting tomorrow. I don't know what to expect, and I have to admit not much. They don't know about my self-diagnosis and I'm not sure I should mention it.
Hello - sorry to hear your feeling this way. You'll have to follow your own gut instinct/ inner GPS, but if it were me I would definitely mention it as something you've been wondering about yourself which may potentially explain some of your challenges.
How the therapist reacts to that information may be telling - if they're dismissive or have old fashioned ideas, they may not be the right person for you, if they listen with an open mind and try to explore the self-diagnosis with you alongside the anxiety symptoms, that's a great sign that they're a good therapist worth their salt. It should be 100% your choice whether to mention it though, either initially or after a couple of weeks, depending on how the conversations between the two of you go. Good luck!
@@amineurodivergent Thanks so much. I haven't mentioned it yet, I will test the waters first. I told her that my son is Autistic though. It's meant to be for discussing my trauma issues, so I'll see how it goes at this stage.
I think you'd really be doing the world a service if you took the audio from this entire series and turned it into a podcast, also/ No new work, beyond a little intro/outro maybe, but just make the audio available for people to listen to. This isn't like a yammering podcast with people talking over each-other, or everyone giving their not-thought-out opinions. I might have done something similar if I had any expectation that I could do anything even THREE times on a schedule, let alone 26 (and counting)-- your voice is unique in this space. I'm a fan of many of the women you've mentioned, but found the men on UA-cam discussing autism VERY, VERY off-putting. It all feels VERY engagement-y, VERY for-the-algorithm-y-- your series feels real and authentic, for obvious reasons, and has a narrative to it, rather than jumping around-- jumping around is good sometimes, but it's nice to have something that tells a story. Also, I'm in the US, though very familiar with "UK stuff" and I wouldn't say anything about the series wouldn't translate just fine to anyplace in the English-speaking world.
Thanks, I really appreciate this comment. That's actually not a bad idea. I did consider doing a podcast before I landed on doing these UA-cam videos. It never even occurred to me to use the same audio for both, seemed like a one or the other proposition as I just didn't have the spoons to publish over multiple platforms. I'm going to look into that - people keep telling me I need to increase my audience but I don't really know how to do that, otherwise I would. This might be a good way. Thanks!
@@amineurodivergent My only advice, I guess, would be to just "keep doing what you love" and the audience will find you. Hilariously, my channel unexpectedly blew up about a decade ago, but I was so confronted/demand-avoidant, I pretty much never posted anything important again.
Posting new content on a reliable schedule (as you are doing) seems to be part of getting the algorithm to notice you.
This is where that voice in my head says "YOU should post something new about YOUR own neurodivergent experience"-- a voice I've learned to ignore.
It just dawned on me that it might make some difference that my posting comments on here might help (any engagement does, but I mean more so) because of the stats of my channel.
Oh, also, engaging in the comments is supposed to be good for you, too.
@@Kauffy901 Oh how cool, I just binged your videos! Hello fishes. Your sounds are awesome, you should totally post again, just randomly. But I can see where sudden popularity would just turn into a big fat NOPE overnight.
@@amineurodivergent That day (Predator noise) was like a perfect storm of hypomania and the release of "Predators" and ridiculous confidence (it comes and goes). Funny-- today, I was thinking of taking down all the non-sound videos. Who knew my Mr. Rogers would hit a chord with anyone?
@@Kauffy901 My take - it's pretty rare to see genuine happiness and hilarity like that. It was just a really warm, goofy 6:38 to have captured, and it's kind of impossible not to smile and chuckle through it. I've also now tried predator and cricket (and guitar flange and broken radio) multiple times and I suck. I'll throw in my sh*tty attempt on my next video (which may not be this week as it's been a bit of a rough one, I might need a week off) if you randomly just drop another noise video onto your site after a multi-years-long gap! 🤣
Litterally me too. At last there is a reason for most of the things that have happened to and with me, my whole life.
Still going through the forms atm.
Highly recommend So you think your autistic, a workbook for the confused person who is trying to figure things out. by Samantha Stein. It helps you gather your experiences in an order that will match DSM5 criterior. Im still going through the book, but it would have helped me do the forms.
My Tip: Journal as many memories as you can before you start the process, its going to help filling in the forms and answering any questions pounced on you along the way if you can, look back at your journal /spreadsheet or how ever you are gathering your info.
Samantha Stein book 'So you think you're autistic, a workbook for the confused person trying to figure things out.' Has really helped to gather memories of experiences in one place.
Yeah I did the spreadsheet thing, coz my brain is so scattered its the only way I can put my info and stuff I've found into categories that will make sence later and to anyone else.
I later did a massive stationary haul, to help keep the paperwork together in printed out format as well as on the machine. Helps to refer too as you go along.
Stage 1: Contacting GP
I watched Yo Samdy Sam and also Im autistic now what for advice on approaching GP, this helped greatly. ua-cam.com/video/sQ102wzqaXY/v-deo.htmlsi=BWEHEOVk061Uq6IB
I wrote an 8 page letter that I emailed to the GP, stating experiences I felt showed the traits, scores from Exceptional Individuals online quizzes (which are NHS approved pre screeners btw) stated why I wanted to be tested, what it would mean to me and how I would deal with it if they said I wasn't autistic at the end. And requesting to be assessed.
Following that I was emailed AQ50 and also Adult ADHD self report scale ASRSv1.1 symptom checklist. A lot of those went back over what I'd answered in the Exceptional individuals site so that was quite quick to fill in. I disscussed the whole thing in email with the admin of the surgery and never needed a gp appointment. My GP was happy to refer me to the next stage from those results. May 2023 They told me the next stage is between 6 to 18 month wait, to have a pre assesment, to see if you are allowed on the actual waiting list for actual assessment, which is up to 3 years for autism assesment and 5 years for ADHD assesment.
Stage 2: September 2023, more forms.
Have now recived a bunch more forms,
WISH I'd got further through Yo Samdy Sams workbook, as trying to fill them in from scratch, really triggered me, bringing up painful memories. but I am commited to getting diagnosed for my own peace of mind.
VERY thankful to have researched places that were nearer to me and specialised in diagnosing women (as Meg from 'I'm autistic now what?' channel had suggested in her videos) why? Because the name at the top of my forms mentions a place to be diagnosed that specialises in CHILDREN!!! As you or someone else said there may be a 'section' on adult autism but most of it is based on young boys as thats where the research has been.
As a high masking woman , the wrong side of 50, I had discovered thanks to Autism.org that DISCO format is a much more thorough test and more likely to diagnose women. So I stated on the form that I'd found that out and requested if I was allowed to be assesessed, would that place be a possiblity for me)
For anyone else wondering on the NHS pathway so far, these forms were
Dual Assesment Patient form (27 pages!)
Empathy Quotent (EQ)
Observer Assesment form (This is for family or anyone who has been close to you during early childhood and throughout your life) to add their experiences with you.
And other un-named forms checking my health status in relation to my heart.
***Without additional people to fill in the Observer forms, it stated that a doctor is likely to give results that are inconclusive. **
I realised that is due to the fact that these conditions are life long developmental differences, so will have been showing traits since early childhood and throughout life.
I struggle with deadlines and as a dyslexic forms are really difficult, it was sent as a pdf which windows narrator couldn't read out. So that made it harder still. The email from the NHS who sent me these forms wanted them returned, completed in TWO WEEKS!!!
I wanted to do the best job of this I could and put a ton of examples in, thankful to write it online so I could make the reply sections as long as I needed them to be. 👍
I sent observer forms to 3 people. Two from childhood and one to my current MH person. I feel the MH person knows me well as I have felt safe to unmask around them.
If you are sending the forms to family, maybe get them printed so they can look through them slowly, before filling in on a computer. The forms for them are very long too.
letting your fam or close friends know about all this before the forms arrive, if they are going to be ok to ask to be your observer. Having observers is massivly important and the forms are long, so best warn them in advance rather than dumping an exam length form on them at short notice and expecting a reply in 2 weeks for the deadline.
I'll share what it helping my anxiety in another reply, coz this turned into a brain dump!
Hope it will help others to have an idea of what to expect from the NHS route at the time of writing in 2023 in the UK.
Thank you - this is absolutely superb information and reflection. So many people don't have the wherewithal or the spoons to put as much effort and agency into pushing through for what's needed and advocating for themselves as you clearly are. It's horrendous that so much of this gets put on the individual to have to fight for, and I'm increasingly seeing (it sometimes takes a bit of effort past my white male privilege) how much MORE effort it takes for people who aren't male to get an ASD diagnosis.
I'm getting increasingly interested in intersectionality and how, dependent on age, gender, race, socio-economic background, sexuality, it gets increasingly and increasingly and increasingly difficult to even get recognised let alone get the support you need. The more you deviate from the traditional picture, the harder it becomes. exponentially. This is incredibly disheartening, but something that can't be ignored.
Add exhaustion levels/ variable executive function push-through strategies and this uphill struggle for recognition becomes all but impossible for some, who just give up and accept that the system has made it too difficult for them. I'd be really interested to keep in touch and learn how you go. The differences in ease of passage through this terrain between men and women (not to mention every other factor mentioned above) is really stark, and I'd love to work with others to help surface this more than I have done. There's only so much value I can add by just talking about me and perpetuating an already recognised 'type' in all this.
Everything you've set out here is incredibly useful and there will clearly be bigger and better platforms than mine to elevate this stuff more up into people's consciousnesses who need it. You and others can - and absolutely should - be really powerful voices in taking all of this forward and making it better for those who follow. Just hugely impressed with what you've pulled together here - thank you for sharing it on my little page, I hope others who can benefit from this read and absorb.
Thank you for all this info. I'm also waiting for assessment, but in the Netherlands. I positively self diagnosed in March this year, mustered the courage to write my GP about it in April. My GP wasn't surprised (he knows me since I was 7, over 33 years now) and gave me a few options to look at for assessment nearby. Some that where covered by healthcare (similar to NHS) and some private. And gave me the choice of where I wanted a referral to. After some weighing I selected one and called them. They needed me to fill in some forms, have the referral from my GP as well as the records of my earlier dealings with mental healthcare. Once all that was gathered I was placed on a waiting lists (May). If I understand correctly I will be called for an in person intake interview somewhere before next summer. After the intake it will be questionnaires, an IQ test, and interviews with both me and family. But still waiting to see how everything goes.
Could have selected the private one and be assessed in a couple of weeks. But to me it felt important that they had nothing to gain from giving me the diagnosis (the private ones all immediately showed all the guidance they could also provide past diagnosis for X amount), so I went for an organization that in my mind wouldn't gain that much from diagnosing me.