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Two years

Discussion in 'Help and Support' started by Penumbra, Apr 7, 2021.

  1. Penumbra

    Penumbra Member

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    I just heard back from the autism evaluation clinic here. It's going to take them two years to even schedule me for an evaluation. I don't even think I'm going to live here two years from now. What is the point? I knew this would take a while, but that's the worst waiting list I've ever faced.

    If this was just about someone assigning me a label, I wouldn't care so much. I feel like I need support though. I don't know what to do now. I don't want to be threatened with homelessness again.
     
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  2. OkRad

    OkRad μῆνιν ἄειδε θεὰ Πηληϊάδεω Ἀχιλῆος οὐλομένην V.I.P Member

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    Do you have to go to that place? Is there another place? In the US, I thought privatization meant no or less wait times. But I waited 9 months for my first eval!
     
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  3. paloftoon

    paloftoon Well-Known Member V.I.P Member

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    Put yourself on the waiting list and keep looking for other places. You can always remove the appointment if you don't need it anymore.
     
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  4. Penumbra

    Penumbra Member

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    Thank you. I was panicking a bit. I don't handle failure well and this was just another wall in my way. I can try other places. I just thought this was going to be more convenient because they're connected with my primary care doctor. I hope I can find something sooner. My life is too unpredictable right now to schedule this more than a year out.
     
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  5. Fino

    Fino Alex V.I.P Member

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    I don't actually know of anything, but I feel like there must be a way to receive services sooner than that. If services were absolutely necessary, how could they expect anyone to wait a number of years?
     
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  6. Raggamuffin

    Raggamuffin Well-Known Member

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    I would suggest reading about Autism, there are plenty of books and websites which will provide you with valuable insight and information into the spectrum. Places such as this forum are full of understanding people who can relate to experiences and hardships those on the spectrum face.

    It's truly difficult knowing that you have such a long wait, but it doesn't mean you can't be proactive in learning more about Autism. I truly believe that the more you know about the spectrum, the easier it can eventually become.

    My brother has been waiting over 2 years for his assessment. I've waited about 8 months so far.

    Ed
     
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  7. Gift2humanity

    Gift2humanity Well-Known Member V.I.P Member

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    The homelessness worry must be awful for you.
    You're not alone, I have big worries hanging over my head.
    All we can do is "be with ourselves" where we are now. If we cannot control a situation, worrying worsens how we feel in my experience.

    As far as support goes, come on here and I am sure people will support you with your autism related difficulties, I, for one, am happy to.

    As for the waiting list, bummer, however, think of it this way, think of how quickly time goes.
    Two years ago feels like two weeks ago when I look back, if you can think of it in that context and not think of the waiting, as you can do nothing about it, that's the way forward until you can get assessed.

    I don't know if you have any co-morbid mental health issues, many of us do.
    If so, maybe you can go to your doctor and ask to be referred.
    In our area of the UK we also have a living well team, GP's can refer us, I am engaging with them.
    The mental health team have also referred me to charities who I am engaging with.
    I'm after some DBT for my BPD/EUPD if I can get it, as I am realising that "trying to stay with myself" and trying not to engage the thoughts that intrude is the only way forward for me.

    As for sensory issues and other autistic traits, please do keep posting on here, some members are self diagnosed, we welcome them all.
     
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  8. Suzanne

    Suzanne Well-Known Member V.I.P Member

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    Come to France lol

    I read so many places on line and confirmed by some French, that aspergers is not acknowledged here and no way, for an adult female, but it was cautiously mentioned to my psychiatrist and within a month, I was formally diagnosed with being grade 2 to 3 asd.

    At first, because I had very little confidence that I would ever get a diagnosis, I chose to believe that it really did not matter if I did not get one, but goodness me, it does matter.

    I am more confident now with my diagnosis. I do not hide myself quite so much and am fearless when I tell people I am on the spectrum. I also get to see my regular dr for free and here I am, a British person living in France, so I feel indebted to them, really.

    If our lives just revolved being on aspie central, then a diagnosis would not be necessary. I came here when I was self diagnosed and have had nothing but a welcoming "hand" towards me. However, we live amongst neurotypicals and thus, that formal diagnosis is very important.
     
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  9. Gift2humanity

    Gift2humanity Well-Known Member V.I.P Member

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    You are not a failure.
    Walls can feel insurmountable, if we feel we cannot climb over them, yet we can find ways to walk round them - I hope that makes sense.

    As per my previous post, I want DBT for my co-morbid Borderline Personality Disorder, a psychotherapist refused psychotherapy, due to rigid thinking, that was before they identified my Asperger syndrome though, we do think rigidly.

    If the NHS can't give me DBT or I have to go on a waiting list, I can try to get around that barrier, as I asked a local mental health charity, I was referred to, they are looking into mindfulness which is part of DBT, the part I badly need.

    I've started constantly trying to practice it as well, that way I am walking around the wall rather than trying to climb over it. A bit of a long walk, yet it takes away that "insurmountable" feeling when we think of the wall.

    Panicky feelings are horrible, aren't they? They are too quick, pressurising, we can "be with them in our bodies, and try not to engage the mental chatter that comes with them" the feelings are actually in the body rather than the mind, "feeling them in our body, while trying to just notice the mental chatter without engaging it" is the only thing I feel I can do to help myself.
    How about you try this?
     
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  10. Gift2humanity

    Gift2humanity Well-Known Member V.I.P Member

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    It's a postcode lottery in the UK, with the NHS, some people do have long waits. Depends on where in the UK you are.
     
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  11. Alexej

    Alexej Well-Known Member V.I.P Member

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  12. Neonatal RRT

    Neonatal RRT Well-Known Member

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    I see you're from the US. In the US, you do not have to go through your primary care physician to see any kind of specialist. You do not need a referral,...that's not how things work. My primary care physician didn't know I even had been diagnosed until I told him a year later. I live in western Michigan, there were no less than 6 autism clinics in the Grand Rapids area, alone,...3 of which dealt with adults. Grand Rapids is not a huge city. It took me 2 weeks to get an appointment.

    Just move on to a different clinic. 2 years is ridiculous,...6 months is ridiculous, for that matter.
     
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  13. Gift2humanity

    Gift2humanity Well-Known Member V.I.P Member

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    Online assessments are useful but not diagnostic.
    Handy to take with you when you get assessed.
    Hope you can be seen soon, sounds like you can in the US.
    Healthcare free in UK and waiting times seem to differ depending on what region you are in, within the UK.
     
  14. OkRad

    OkRad μῆνιν ἄειδε θεὰ Πηληϊάδεω Ἀχιλῆος οὐλομένην V.I.P Member

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    You absolutely do need a referral unless you have $1200 or more to spend on the assessment. American health care is for the wealthy and the insured and the insured have rules and rules include referrals.
     
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  15. Neonatal RRT

    Neonatal RRT Well-Known Member

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    You do not need a referral for mental health, or anything else for that matter. I've been to see surgeons, nephrologists, endocrinologists, and my primary care was not involved at all,...and the insurance company had nothing to say about it. It would be fair to say, any specialist would prefer a referral, it would be fair to say that your primary care physician would like to be made aware, but it is not needed. You can take control and see any specialist without going through the referral process. The folks in the billing office should know the proper billing codes,...and the insurance company will pay if coded correctly. This was my concern, as well, but when I spoke with the billing office at the clinic, they said not to worry about the money. My insurance covered the cost (even though they said they wouldn't because I was over 18yrs old), minus my co-pay.

    If you call up the autism clinic and explain your situation, it is likely they will work with you.
     
    Last edited: Apr 8, 2021
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  16. Alexej

    Alexej Well-Known Member V.I.P Member

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    Thanks to @Gift2humanity for the note of caution.

    Just to point out that this is not your usual fill in the questionnaire and get a score type of assessment, it is a full assessment where you actually interface with a real live person, and can get a diagnosis. I have not used it myself, but am signed up to their weekly newsletter. The email is short to the point and digestible.
    I accept that what I wrote is eminently open to misinterpretation - for which I am sorry.
     
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  17. Penumbra

    Penumbra Member

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    Thank you everyone. I'm entirely lost, so I'm relieved I'm not the only one who has faced this.

    This is the one thing I feel I have the most control over. I started reading "Connecting With The Autism Spectrum" by Casey Vormer after I saw their book recommended. I identify with too much with what I'm reading to question whether I'm autistic anymore. It's nice to have someone who understands on a personal level explain things in detail because I never understand medical jargon from professionals. At least I can stop wondering what's "wrong" with me.
     
  18. OkRad

    OkRad μῆνιν ἄειδε θεὰ Πηληϊάδεω Ἀχιλῆος οὐλομένην V.I.P Member

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    Clearly each place is different. I needed a refer to the place I went, both places, actually. All insurance is different and each place is different. You can't make a blanket statement like, "No Referral Needed", especially in the US where the health care system is insane.
     
  19. Neonatal RRT

    Neonatal RRT Well-Known Member

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    Medicare and PPO insurance,...no referral needed. Some HMOs are a bit more controlling, and yes, sometimes a referral is needed. So yes, you are correct. I have an HMO, and no referrals were needed for the specialists I used. :)
     
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