Autism / Aspergers Diagnosis & Mental Health support

[ProfessorWorm]

Could you please expand about the social model applied to therapy?

An acknowledgment that not all the issues I’m experiencing are my fault or due to internal issues, but because of a society that refuses to accommodate my needs. Teaching actual coping mechanisms and ways to ask for help that are comfortable and practical for me, perhaps even coordinating with an OT for sensory related accommodations, instead of teaching me new ways to barely tolerate masking or encouraging me to take responsibility for things that are entirely outside of my control. Working on being safe during meltdowns and how to head off downward spirals, rather than trying to stamp them out of existence. Not suggesting ways to bond with others or manage executive dysfunction that boil down to ‘have you tried not being autistic?’, but working with the abilities I do have and making usable suggestions. Assuming I am different not deficient, and cease trying to therapize away inconvenient parts of my autism.

 

[Margot]

An acknowledgment that not all the issues I’m experiencing are my fault or due to internal issues, but because of a society that refuses to accommodate my needs. Teaching actual coping mechanisms and ways to ask for help that are comfortable and practical for me, perhaps even coordinating with an OT for sensory related accommodations, instead of teaching me new ways to barely tolerate masking or encouraging me to take responsibility for things that are entirely outside of my control. Working on being safe during meltdowns and how to head off downward spirals, rather than trying to stamp them out of existence. Not suggesting ways to bond with others or manage executive dysfunction that boil down to ‘have you tried not being autistic?’, but working with the abilities I do have and making usable suggestions. Assuming I am different not deficient, and cease trying to therapize away inconvenient parts of my autism.

Such a powerful description, I couldn't agree more

 

[Rechnin]

Congratulations, it is all becoming real and near , right?

Yes, it is, stressing a bit now it all seems to becoming around. Worried about the outcome.

 

[Margot]

Yes, most people feel like this I gather. All the wait and build up creates a drama about it. You build your new identity and them worry that it will be taken away, again.

 

[Rechnin]

And, even though I am almost a year in to this process I still seem to be filling in the same yes or no questions that would normally be part of the filtering process. I have just filled in an AQ and an EQ form and my Mum filled in a CAST form, but, these seem very similar to others that I have done before.

 

[Rechnin]

I am in a similar position as you, but, for somewhat different reasons. I have struggled with mental health and learning difficulty issues in the past which has led to me bouncing from job to job with periods of unemployment in between and changes in my mental health.

I started my current job and was flying... until about a year and a half ago when they changed everything and it became more about stats, targets and accuracy. Everything fell apart, I don't like change. It looked like I was going to loose my job until I literally screamed that in a meeting that my current issues might have something to do with Learning issues, which they claimed they knew nothing about, and they sent me for an Occupation Health Assessment during which it was shown I have Dyslexia and Dyscalculia as well as suffering from stress and anxiety.... then the person holding the assessment asked me if I had ever been diagnosed with Autism.

That was like a light being turned on as all the things above seem to come together and they can become a vicious circle as one can make the other worse and the worse I feel makes my other symptoms stronger which means I make more mistakes and so on and so forth. I am currently in a limbo as my current work seem to be waiting on the outcome of my assessment before doing anything else.

I am my own worse critic which doesn't help, so I can understand how Mental Health can be involved in this and how neurodiverse people can be more susceptible and even fixate on the negative side of things. Is this true? At the moment, they have put me on an easy queue, but I keep getting niggled for little things which my mind sees as being the greatest issues ever and I am constantly caught between fight and flight, but, I don't want to go bac k to yo-yoing from job to job,

 

[feesable]

i've been pelted around a similar tennis game for years, too.
i've repeatedly been on waiting lists for psych support, explaining multiple complex needs and that CBT isn't helpful, that I need ND and trauma centred therapies. pretty clear, you'd have thought.

i repeatedly got to the 'start of therapy' (approx 8months wait each time, where i'm struggling w/ addiction/suicidal ideation... but yknow, no biggie...) to find that it wasn't the start of anything, just an assessment... and each time: oh look, "your needs are too complex, we only offer CBT".
when I say "did you read the [extremely detailed] application notes?" they say "oh, yes, I see that now". like they hadn't even looked at it... and it took me ages and caused me pain to go into that much detail each time. plus they ask you to explain your traumas and then say 'can't help, you can go now', leaving me to put myself back together again afterward.

i eventually stopped going to the assessments. pretty sure i'm now listed as 'someone who rejected the offer available'. a troublemaker who refuses help. lol.
honestly surprised they haven't offered me a wheelchair, since "hey you're disabled, so here's some disability support".

it's literally insane. and yet we are the 'insane' ones.

one GP a few years ago walked out of the room when I was in crisis begging for help after my mum died (so many multiple needs here...) because i was homeless and she refused to accept me as a patient without a fixed address (i've since found out that's illegal). and last year my GP at the time (after 2/3 rounds of the waitinglist>CBT game) actually said "there's nothing we can do for you". end of. like, if i hobbled into a surgery with a leg hanging off, i wouldn't expect them to have the resources to do the surgery right there, but i would expect them to refer me to the people who could deal with that. yet that's what we do with mental health... watch people's legs fall off and mildly shrug 'oh well, not my problem. nothing we can do. you probably made your own leg fall off just to be dramatic about it all'.

there's zero trauma support in salford at all, and they just accept that as fine. and now the CCG is asking me to be involved in forums and stuff because 'my input is valuable to them'. they all sit in safe, stable, paid jobs while we go thru hell, and are expected to 'fix' them... unpaid, and un-resourced.

drives me NUTS! how are we supposed to be strong enough to fight their unjust systems when they persist in pushing us back down?
logic, anyone????

 

[trueriver]

hi everone,
I was diagnosed last Autumn, just before Covid, and in fact due to the effects of Covid the diagnostician has not yet been able to produce the full report.

I was interested n the "game of tennis" where Aspergers is used as an excuse for not providing other MH support. When I first asked my GP to refer me for a diagnosis early this century, my GP refused, saying basically that there is no point knowing as there is nothing the NHS will give you even if you get a diagnosis. At the time I also guessed that (being a fund-holding practice) she did not want to spend money on a diagnosis that would not have any benefit. Having read the experiences here, I now wonder if she was also thinking that I did get counselling from time to time through the NHS, and she might have feared that with a diagnosis that support would be harder to get. Makes me see that advice (which I resented at the time) in a more positive light.

Some years later, when I went back to my GP to ask again, the procedure had changed. INICE had mandated that it was not any longer up to the GP's clinical judgment to decide whether to make a referral, but she had to apply a scrrening consisting of a number of those questions where you have to strongly-agree, somewhat-agree, ..., strongly-disagree with various statements. Whether to refer or not was entirely on the basis of the score achived in the screen, and I got referred for diagnosis.

Which was then refused -- they said (unprofessionally in my opinion) that they could not say that I was on the Autistic Spectrum but also could not say that I wasn't.

I had to complain about that their dodging the question before I got an additional assessment and got the diagnosis. By then it was around six years after the intitial referral after the screen.

So far my diagnosis has had no impact at all on any treatment, neither for mental nor for physical health.

I am currently asking for a reasonable adjustment over how my physiotherapy is being delivered under Covid restrictions, and it will be interesting to see if my diagnosis makes any difference there.

 

[Rechnin]

So, last week the local Autism team spoke to my mum and were on the phone for about two hours... IU will found out what the outcome is in the New Year.

 

[Rechnin]

So, I am now officially Autistic as I have Aspergers. We will see if this make any difference.

 

[Margot]

Congratulations, welcome to the squad. How do you feel about this.

When I was diagnosed I felt huge relief...

 

[Rechnin]

I felt brilliant at first, almost a two fingers up to all those people who said I all the things you have heard before (awkward, idle, don't fit in, don't listen, argumentative and stupid being the highlights). But now, I am unsure as to where things go, is the tag going to be a good thing or a bad one.

 

[Margot]

This was helpful for me.

 

[Rechnin]

That was interesting, and it seems to give me some ideas. Thanks

 

[Hilde]

Any other people with aspergers / autism experience this?

I just got off the phone talking with a friend about mental health support and the experiences we have had with the local health authority.

I was diagnosed with aspergers about 11 years ago, having been in mental health therapy for about 9 years previously with acute depression, stress and anxiety. During the course of “therapy” for these conditions, I happened to mention to the therapist at the time that they might like to see if I had aspergers. I had done my research about the condition and it seemed like a perfect fit for my experiences in life = deep interests, communication problems, dislike change, sleep problems and more.

After a lot of discussion the therapist decided that maybe I should be tested. The results were a diagnosis of Aspergers.

This though had a interesting side effect. The mental health unit in my town shut down and all cases were referred to a new unit some 5 miles away. In the course of this my case was shut down as the mental health team said there was nothing they could do for me. I complained stating that basically they were just wanting shot of me as they could not cure me and that they were just trying to increase their success statistics.

After a long period of discussion, it remained at an impasse. They kept saying “You have aspergers syndrome and we do not treat that or offer support for that.”
My continued argument against that was “Yes, I have aspergers syndrome. However, I have psychological problems independent of aspergers syndrome which I need assistance and therapy with viz depression, anxiety, stress and anger management. Thus you should be helping me out.”

Thus began the game of “tennis” between the mental health team and my doctor – with me as the “ball” I was batted to and fro – mental health team saying go see the doctor, doctor kept on referring me back to mental health team.

At the current time, I am not being seen by anyone in that particular mental health unit. After a lot of complaining, screaming and shouting on the phone, I am finally being seen by a psychologist on an infrequent basis. While this is not perfect, it is at least a step in the right direction.

Anyone else experience something like this?

This sounds terribly familiar. Mental Health Services are vastly under resourced. Asperger's is NOT ( as you know) a mental illness yet so many of us also have issues with anxiety / depression. Mental Health Services are unequipped to support someone who is autistic. I made a formal complaint to my NHS Trust regarding my inability to access services for my son who is also autistic. The Trust have agreed to make some changes to their referral system by having a named person who should have more training in autism to ensure that adjustments are offered. Mandatory training on autism will be put in place. Yes it is dreadful and my experience is complain in a constructive way to enable change. This is exhausting, I know but currently I can think of no other alternative to make things better for all of us.

 

[Hilde]

This was helpful for me.

Hello, In found this inspiring. I have been recently diagnosed. The last member of my family of four. At times its a bit overwhelming but this helped me to see the positives. Thank you so much for all who have been involved in making this and sharing this video.

 

[Autistic Butterfly]

I’m autistic. I work in autism healthcare. This is a re occurring theme with ALL MH Trusts. There seems to be the “too difficult to treat” label given to autistics.
CBT “can” work for autistics… if it is adapted to our needs, if the therapist has knowledge of autism. I would recommend finding an autistic therapist. There are plenty about.
CBT tends not to work, because IAPT assess us incorrectly. There are mis communications and we are treated for anxiety/depression (Double Empathy Problem)
Many of us are anxious or depressed from previous trauma. Therefore the trauma should be treated. Once the trauma (PTSD) has been worked on and memories correctly filed - then you can deal with your thoughts on the matter.
It is noted that Talking Therapies shouldn’t be used on people with trauma as you can be further traumatised.

 

[Hilde]

Hello,
that is a really helpful post. Thank you for sharing. I completely understand what you are saying. Have you any links you can suggest so that I can do further reading?
I am a trained RMN who is autistic. I have one son who is currently attending for CBT. I do believe that he has PTSD which has been exacerbated by the pandemic. Sadly there is no option for treatment in my area but Talking Therapies. I don't think trauma occurs to many Health Care Professionals who naturally see the anxiety and depression but not the underlying cause.

 

[YogaD]

hi. I was diagnosed 3 years ago at 46 and was seeking diagnosis due to ongoing anxiety/depression/overwhelm. Was so disappointed that there was no support post diagnosis. I got a mental health referral because I was struggling at start of year which got re directed (without my knowledge) to the adult autism team, who had previously told me they had no resources for follow up support (Was on waiting lis for a "self regulation" programme but that funding got pulled at start of Covid). So I got an unexpected one of call at work which latest about half an hour and was of little to no help an when I asked my GP how my mental health referral was progressing months later at the verge of breakdown he said it had been closed (after re direction to autism team). On the day I finally had to surrender and sign off sick I was assessed by mental health team as requiring some sort of intervention, I was told that it would be weeks not months. That was almost 2.5 months ago and I'm not holding my breathe. Just so grateful that the advert for this course popped up on Facebook after a remarkable meeting with a positive neurodivergent community - (I went to a music festival in the middle of my breakdown for first time in 20+ years and reconnected with old friends, one of whom is seeking diagnosis herself - they were so lovely and looked after me and I felt some hope for first time in years). I'm throwing my lot in with you good people for the time being and not waiting for the cavalry that most likely will never arrive.

 

[Rechnin]

I am almost going through theame as you above, it looks like I will be going to trubunal but see little positive going forward.