Adults needing help & diagnosis, after misdiagnosis

[Warmheart]

I should preface this by saying that I pre-date dirt, dated Fred Flintstone before Wilma came along, got my first job during The Early Pleistocene.

My primary care doc has me going in for extensive neuropsych testing by an ASD specialist in February. This is at the same behavioral neurology unit that did a workup on me in my 20s. Because ASD wasn't diagnosed back then, they were looking for TLE (temporal lobe epilepsy) to explain the shutdowns, meltdowns, fugue states, panic attacks, disassociation, staring spells, fidgeting, sudden speech loss, isolating behaviors that landed me in psych hospitals three times. They "found" TLE, even with very slight, sketchy seizure activity on EEG, because the meltdowns & shutdowns kept getting me hospitalized repeatedly. Yet, their report states "Made poor eye contact, socially inept, has few friends, too blunt, repetitive behaviors." I guess 20 years ago, ASD really wasn't a diagnosis yet, even with my entire childhood spent in Special Ed classes.

I'm going for diagnosis because I'm more meltdown-y/shutdown-y again, due to menopause's hormonal drama. Those on the spectrum are sensitive, so adding artificial hormones isn't something I can bear. I'm having trouble meeting my needs during shutdowns, and I keep losing speech again when stressed. This time, I'm living independently, so shutdowns are risky. I need to learn how to streamline my life better to avoid sensory/social overwhelm, so I'll require the help of someone familiar with ASD.

How are you dealing with being an adult, and needing diagnosis and targeted services? Sorry to blather, I am surely not alone in being so impacted as to need help. How do you manage until services can assist you? How do you cope with NT friends wanting you to attend events and chaotic functions, because you did so before? I'm anxious that I'll lose speech during testing. Did this ever happen to anyone else? Was the tester angry/frustrated with you, making things escalate? Thanks for sharing your experiences.

 

[Spiller]

Warmheart, I reckon it must be just as hard for anyone on the Spectrum to get understanding help; it's certainly my experience that either no-one cares or no-one knows and therefore runs away.
I finally had an assessment by my local Mental Health Team, after a mere 15 year wait, during which the assessor began with a complete understanding and experience of Aspergers and offering the possibility of psychiatric diagnosis and councelling, then ended by commenting on the "bizarre way ASD sufferers think" and discharging me as I displayed no symptoms of depression.
If I'd known he was only interested in depression I'd've shown him my lifetime of self-harm scars and described my 7 suicide attempts, instead I mistakenly thought I was there to talk about what is wrong with me, not just the resultant symptoms. I did ask him if he knew any alternatives to self-harm, but he just shrugged and changed the subject.
I also paid to see a private councellor, who insisted there was nothing wrong with me no matter what I told him; that resulted in the worst harming I've ever inflicted and I flat-out refuse to see another therapist until I get an official diagnosis now!
Rant done, promise!
How I cope? Cannabis, alcohol, self-harm, one good friend who wants to understand, one good sister with similar issues who luckily doesn't suffer from selective mutism.
Not everyones cup of tea (and I'm not advocating it), but works for me and I'm still alive and healthy at 47 years of age.. and yes, I remember when dirt was invented.. and I was actually seeing Wilma at the time, though I always had a thing for Betty
If there is a mental health system in the UK, I'm so far unaware of where it's hiding

 

[Harrison]

You are still a youngster Warmheart! I remember Fred when he was a tiny tot

Like Spiller I am in the UK and have never received help from the system. The one time I asked I was told that I was a fit, healthy male capable of working, and that was it. Been on suicide watch twice in my life but contemplated it a few more times than that. Never got into self harm unless being an alcoholic for a time counts. I have no people around me as support and often think what will happen to me as I grow ancient.

How do I cope? I work and when I'm not working I close down or come here. Occasionally I might go to the theatre with a friend but I have no real social life.

I don't know the answer and I fear I no longer have the energy to find it, however, I hope you do.

 

[clg114]

As I read about the tough times that some of you have had, it makes me relies something. I am a very, very lucky person. I've spent almost all of working time, working alone and I believe that this is important. I have very few friends and rarely see them. My social life is my wife and family. I have a routine that I follow most of the time and I spend a lot of time alone. My wife understands me and my Aspie ways. I didn't know I was a Aspie until I was 62 years old, so my life wasn't planed around that. I understand myself better since I was diagnosed, other than that it did not change my life in any way. I like my life and just worked out the way that it did. How lucky is that ? By the way, I think your all youngsters.

 

[Cali Cat]

If there is a mental health system in the UK, I'm so far unaware of where it's hiding

If my ex-bf in the UK is any example, the mental health system over there isn't much help even when you do find it. If you're anywhere around Maidstone in Kent, that's the only NHS facility where I ever saw him get any significant help. Sadly, he lives in Newcastle now, and their facility is practically worthless.

 

[James K Trefethen]

Warmheart, what you are going through sounds totally frustrating.


While I would encourage everybody who feels the need to get a diagnosis to get a diagnosis, I don't see what a diagnosis of autism does except for to better ones understanding of one's self. The fact is that accommodations are rare and there is no cure. So if you were high-functioning enough to live independently, what does shutdown look like? I, personally, have stared at the wall for hours. I still ate, slept and bathed when it was time to take care of myself- but I wasn't productive otherwise.

 

[Warmheart]

Thank you everyone, for your input. I'm learning a lot today.
Spiller, you have a lot of courage. My compassion for your struggles. I really admire your grit and humor, and yes, I do understand that there's not much by way of options available to you. I'm amazed at how clueless those past therapists were. Scary! I'm glad your sister is a support.
Harrison, I wish the system in the UK were more supportive. It seems there is more for children than for adults. You, too, impress me as someone brave and kind. I hope that your friend, and your work, give you a sense of stability and comfort.
James, a diagnosis will mean that I can get some (not many) services. Most here are for kids, only. But, there's an agency willing to help adults, once I get an assessment.
Another reason for diagnosis is that ASD in big scary letters needs to be on my medical chart. Meltdowns tend to happen in medical situations. I can't always remain verbal long enough to mention ASD, and there's nobody to advocate for me.
James, a shutdown can make me so unaware that I don't feed myself, pee, or take medicine. I have (twice in the past 3 months) wandered out into traffic, unaware. In childhood and in my 20s, I was hit by a car more than once. I live independently, but, I need to learn to streamline my life better to avoid shutdowns. The agency which helps adults may be able to guide me, I hope.

 

[watersprite]

I'm scheduled for diagnosis in December, and I'm probably as old as you are. I'm in the U.S. I can't tell you why exactly or fully why I am pursuing this, except that I need to. I'm in a type of work that requires self awareness. I'll leave it at that.

There are so many things to respond to in your well thought out post, that right now anyway, I can't. I'm also different than you. Lots going on for me in real life that demands to be attended to; and it takes a lot okay it takes most of my brain power.

I am really poor at offering the proper words of support but know that if I could, I'd compose the right post.
Perhaps we can offer each other some support on here. (?)

 

[Warmheart]

Kestrel, thank you. I sense that you wish to offer support, and that right now, you have lots going on. May things be easier for you, and with professional successes. I'm really grateful for your kindness, and sharing here. Thank you.

I realize I need the diagnosis to qualify for services, and I need the services in order to be more safe when trying to live independently.

 

[watersprite]

Yes, thanks for picking up on the message there.

 

[AsheSkyler]

I've heard some therapists and testing centers are open to writing. If there's a good chance you'll be nonverbal during testing, bring a laptop or writing pad? If you can still write when you get that stressed, I hope they'll be open-minded enough to let you use your fingers instead of your mouth.

It'll be many years before I can get around to a formal diagnosis. But reading up on the things I have has given me the phrases and descriptions, and makes it easier for me to explain why I don't like to do some things. For chaotic functions, I usually say something like, "it's chaotic, noisy, disorganized, boring, and it gives me a splitting headache and no I will not risk my liver or stomach with constant aspirin because you can't pick a better activity". I'm not nice like I used to be.

 

[James K Trefethen]

I'd agree with AsheSkyler in that you are pretty good about writing down what you are feeling- even if you cannot say them out loud, Warmheart.

You have a lot of time until you meet with the evaluators. Luckily, probably nobody who was there before remembers you or what happened.

Autism is a lot better well known than twenty years ago. For myself- though my symptoms aren't nearly so bad, any teacher in their right mind now would have picked up on me having autism when I went to school, but nobody was looking for autism back then. Twenty years ago nobody was paying attention to it... and now they do.

Autism is life-long. When you walk in for your appointment, you want to be able to prove you've had this your entire life. Any other problems may be new but autism cannot be recent.

So, while you are waiting, you can ready youself by writing down some evidence that have had this problem from when you can first remember (or earier) until now. If you hit developmental milestones later than other children, write it down. Like my mother says that I did not speak until I was 2 years old. That's one good sign of autism. Something like that would be worth writing down.

Maybe finding a source that explains what autism is and how it should affect you would be good so you can get some idea of what you'll be asked. Write down your evidence based on the criteria you find and you might be able to assist the investigators in making their assessment.

 

[Warmheart]

James, thank you! Yes, I can write down delayed milestones. My history of hospitalizations goes back 20+ years, so that will be helpful, I guess.

AsheSkyler, wrighting sounds like a workable solutions. Thanks for the idea!

 

[garnetflower13]

As a person who was diagnosed in my late forties, I can relate. I was misdiagnosed with schizophrenia, bipolar disorder, and multiple personality disorder! I now face disbelief when I try to get counseling because of ignorance. Females on the autistic spectrum seem to have a harder time proving it than males, for some reason.

May I suggest some really awesome books, if you haven't read them already? I am currently reading Aspergirls, by Rudy Simone, and Safety Skills for Asperger Woman by Liane Holliday Willey. I think they are mentioned on this site, too.

 

[Streetwise]

Can i ask are you in PERIMENOPAUSE or menopause as my panic attacks are worse around my period and the gp's n.p's won't test patronisingly say with light tap on the top of my head don't you think its this meaning IM a hypochondriac
so I'm left to suffer shock horror !!!
I haemorrhage slightly when my period starts and go in to physical shock but i know a doctor would say oh its a panic attack

I should preface this by saying that I pre-date dirt, dated Fred Flintstone before Wilma came along, got my first job during The Early Pleistocene.

My primary care doc has me going in for extensive neuropsych testing by an ASD specialist in February. This is at the same behavioral neurology unit that did a workup on me in my 20s. Because ASD wasn't diagnosed back then, they were looking for TLE (temporal lobe epilepsy) to explain the shutdowns, meltdowns, fugue states, panic attacks, disassociation, staring spells, fidgeting, sudden speech loss, isolating behaviors that landed me in psych hospitals three times. They "found" TLE, even with very slight, sketchy seizure activity on EEG, because the meltdowns & shutdowns kept getting me hospitalized repeatedly. Yet, their report states "Made poor eye contact, socially inept, has few friends, too blunt, repetitive behaviors." I guess 20 years ago, ASD really wasn't a diagnosis yet, even with my entire childhood spent in Special Ed classes.

I'm going for diagnosis because I'm more meltdown-y/shutdown-y again, due to menopause's hormonal drama. Those on the spectrum are sensitive, so adding artificial hormones isn't something I can bear. I'm having trouble meeting my needs during shutdowns, and I keep losing speech again when stressed. This time, I'm living independently, so shutdowns are risky. I need to learn how to streamline my life better to avoid sensory/social overwhelm, so I'll require the help of someone familiar with ASD.

How are you dealing with being an adult, and needing diagnosis and targeted services? Sorry to blather, I am surely not alone in being so impacted as to need help. How do you manage until services can assist you? How do you cope with NT friends wanting you to attend events and chaotic functions, because you did so before? I'm anxious that I'll lose speech during testing. Did this ever happen to anyone else? Was the tester angry/frustrated with you, making things escalate? Thanks for sharing your experiences.

 

[Streetwise]

Think i was in nursery with Fred wilma betty and barney
and he did'nt own he foot his propelled car