Time for a Diagnosis

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I've been really struggling lately, and feel on the verge of having a meltdown at work and leaving. My marriage is also suffering because of my Aspergers and sensory overload. Today I called my health insurance and learned they'll cover 100% up to $1000 for visits to a psychologist's office to seek an ASD evaluation. The provider has to be in network, which limits options.

Although I've been reading about this for a few years now, it was always from the perspective of someone who couldn't afford a diagnosis. But now I'm taking this more to heart since its much more personal. It's going to be challenging finding someone who specializes in adults, and who also understands the complexities of diagnosing women.

Do you have suggestions on what I should ask when screening providers? Since this is going through insurance, sessions that go over an hour require authorization. It's easy enough for them to call my insurance and get authorization. But my concern is that they'll try to do this over a series of sessions, which can water down their ability to evaluate me. Also, an insurance representative told me that the DSM-V is the bible for diagnosis. But aren't the criteria open to interpretation? And because of this, one evaluator might diagnose me with Aspergers, while another might say I'm NT?

Any input would be appreciated. I do have someone in mind for this. I spoke with him last year and appreciated his experience and understanding of the challenges inherent in diagnosing women. But he might not be a recognized provider in my network. Anyway, thanks for reading this.

Carla

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Make sure you ask if they are a general psychiatrist/ psychologist, or if they have experience treating adults on the Autism/Asperger's spectrum. You don't want a general psych doc, you need someone who has experience with adult people on the spectrum. It wouldn't hurt to find out where they got their degree, too. You want to check to make sure they are real docs, and not someone who got their degree through the mail from some fly-by-night degree mill.

Do you have parents still around, Carla? Part of my assessment was a developmental one, where it would have been extremely useful to have the input of a parent to tell the team about my early years. Unfortunately my father died many years ago and my mother is in her late 80s and too forgetful to do it, so we just had to go on my own memories.

I was diagnosed in the UK and I don't know how it's done in the US – but I just wanted to alert you to the fact that they may ask for a parent's input. If you do have parents around but they live a long way away, it's the sort of thing that could be done by phone. They have a set series of questions which, for instance, help them differentiate between AS and high-functioning autism (where – here at least – a significant delay in speech and language sometimes, although not always, may suggest HFA rather than AS).

As regards the time taken: I had one session lasting an hour, followed by two very detailed interviews each of which took about two hours. They were conducted by a consultant psychiatrist and a consultant speech and language therapist, both of whom work as part of a specialist Asperger team. They saw me together for the first interview, which was about getting a general picture of me as a person, and then separately for the detailed diagnostic sessions. One of these was made up entirely of questions and discussion, and the other involved tasks such as interpreting and telling the story from a picture book and doing a number of exercises with objects, as well as another lengthy interview. They told me straight away that they had diagnosed me with AS, I didn't have to wait.

I found all three sessions exhausting, and it was very difficult telling them things that I'd never told anyone before; I wasn't a member of a discussion forum like this before diagnosis, and I've never had a relationship, so I had literally never told anyone about my difficulties. My body reacted with quite a lot of anxiety symptoms after each session, but the reactions didn't last too long – and after the final session the relief made me feel as if an enormous load had been taken off my shoulders. It might not be quite so extreme for you, as you've already come to terms with your AS and spoken about it to other people, but it's still not an easy process to go through. It's a huuuuuuge relief once it's over!

I can't imagine how hard it must be having to find your own diagnostic team – here in the UK you just have them provided through the National Health Service. Are there any local autism/Asperger charities where you live? They may have a list of experienced practitioners, some of whom may be on your insurance company's recognised list. Or maybe there's a slightly more localised message board, where you could post a question asking for recommendations in your area. There might even be someone who runs an autism/Asperger clinic....with Asperger rates running at something like 1 in 100, surely there must be services in large cities that work exclusively with people with AS? (I've never been to the US, though, so I may have an overly rosy picture of how things work!)

I hope you manage to find the right team to diagnose you, anyway – good luck.

Thanks so much for your response. I didn't realize until today that anyone had responded to my post. This entire process is very stressful for me. It took a few years to fully embrace the possibility that I have Aspergers, and once I finally started accepting this, I felt shame, embarrassment, and loads of doubt. I'm very logical and careful, and with my graduate classes in special education and experience working with students on the spectrum, I would waiver back and forth a lot, not understanding until recently just how much children and young adults are capable of maturing and masking in ways that can disguise these symptoms. But the stress of constantly "performing" coupled with really coming to terms with my inner processes brought me to a point of not being able to deny this any longer.

But as an older woman the diagnostic process may not be balanced, fair, accurate, unbiased, etc. This really worries me. Not only is it difficult finding someone who has experience diagnosing adults, but it's even more challenging finding someone who understands women on the spectrum. Early childhood information would be helpful, and I would value this part of the process. But my dad is almost mute at times and very difficult to talk to. In fact he exhibits many of the characteristics of someone on the spectrum. My mom has limited memories of my childhood and tends to gloss over what she does remember. So neither parent would be able to contribute something that would be helpful. They are also in their late 70s and are very resistant whenever I talk to them about Aspergers. If the psychologist were to insist on talking to them, I would refuse.

Anyway, my insurance will cover someone out of their network if no one in-network can be found. I believe this is required by law. I've already told them that the six options presented to me don't work with adults, so I'm now looking for someone out of network. But even then the options are still limited. Also, I may need a diagnosis that carries weight and that can be presented to my employer should I reach a point where I need some assistance. Because of this there's even more to consider. But I'm hopeful I'll find someone who meets these requirements. It's just going to take some time.

But something to consider for anyone reading this who hasn't gone through a diagnosis yet, is the possibility of being told you're not on the spectrum. I've taking this self-diagnosis to heart and was very careful and thorough reaching this conclusion. This is not something I took lightly. I read and researched, made extensive notes, did some online tests, walked away, reconsidered and went back, and stepped closer and closer to knowing that this is who I am. Not an easy thing to go through, especially with no one to share it with. But it became undeniable. As an older woman who feels certain of her self-diagnosis, do I really need to pursue a formal diagnosis and risk getting someone who doesn't understand the intricacies of diagnosing a woman? How will I cope if I'm told I'm wrong? Aside from possibly needing this diagnosis for work, will it enhance my life in ways that self-diagnosis can't?

These are important questions to consider. But I know I need to do this. I just hope I can find someone who will be thorough and take this process to heart.

It's interesting how different people respond to it. I just felt enormous, overwhelming relief that I wasn't an over-sensitive cry-baby after all!



This is what made me feel pretty sure: the realisation, that whenever I'm with another person, however close a friend and however relaxed the situation, I'm giving a performance.



My Mum was the same to begin with, although I'm sure she's on the spectrum herself! I wondered if it might be because she felt I was trying to ascribe blame to her and my Dad for an unhappy childhood (even though I wasn't unhappy) – she didn't really understand what autism is, or that it's nothing to do with upbringing or family background other than genetics. Now that I've been diagnosed by two senior doctors, and now she knows a bit more about it, she's much more accepting.



It's an incredibly challenging process. I was pretty sure that I have AS, but I felt very anxious about whether or not it would be confirmed by the assessment. On the other hand, I wasn't prepared to disclose it to anyone at all without a formal clinical diagnosis – I absolutely needed that validation. If the result of my assessment had been something other than AS, I would have gone through the reasons carefully with the specialists who did it, and after that, if I'd really thought they were wrong, I would have considered looking elsewhere.

I was open to other interpretations of my difficulties, though, I think it's best to retain as open a mind as you can. I don't think anyone would deny that I have significant challenges and that I need some support and adjustments at work. If those challenges had been ascribed to something else – just for the sake of it, say a social anxiety disorder of some kind (I don't really know anything about these, it's only an example) – then I would still have been open to that, because it would still give me a passport to services and there's also the possibility of treatment. So, if someone does say you don't have AS, they're not necessarily denying that you have difficulties and need support.

I found this web site (which you may already be well aware of, I'm not sure):

http://www.rceb.org/community/large.html

Whilst much of it is focused on children, there's also a directory of adult resources. I wondered if you might be able to find a therapist by contacting someone in the directory and asking for advice? It just sounds as if it's a complete lottery for you otherwise. In the directory it says that the Alameda County Developmental Disabilities Council has a forum for discussion of issues – I've no idea whether this is accessible to you or not, but it might be a way forward. As well as AS, I have ME (myalgic encephalomyelitis, also – ludicrously – sometimes known as Chronic Fatigue Syndrome), and contacting local people who'd already gone through the process of diagnosis and who knew about the services available was immensely helpful to me at the beginning. It's another condition where there's no blood test to diagnose it; sufferers sometimes encounter disbelief, occasionally even scorn. It's very hard to get disability benefits and assistance with making your home wheelchair accessible, and I'd never have succeeded without the advice of other local, experienced people with ME. I can't recommend it highly enough as a means to find your way through the process.

Keep us updated with how it's going for you, anyway. You will get there eventually!

You are awesome. I'm grateful for all the time you've invested in responding to my posts. And I really appreciate that you took the time to look for local options here in Alameda County, especially considering you live overseas. Thank you!!

I've tried keeping an open mind about the possibility of having overlapping diagnoses. This is not uncommon, and I agree that it would be very beneficial to walk away with something I can sink my teeth into, whether it's Aspergers or a combination of anxiety disorder, OCD, etc. But Aspergers is the one umbrella diagnosis that seems to capture everything under one roof and explain how these different things about me function together as a system. Last year I reached a point in my certainty that I very carefully and selectively began to share this with a few people. It was uncomfortable, but it was an important part of stepping into this wholeheartedly, with the goal of using my writing skills to eventually share my experiences with others. There's definitely wiggle room for alternative diagnoses, though.

So many women seem to be self-diagnosed that I want to validate them and their own journeys. But at the same time I feel there's value in pursuing a formal diagnosis, if they can afford it. Without health insurance (which I've mostly not had as an adult), this hasn't been an option, and I mistakenly assumed my insurance as a part-time employee wouldn't cover anything. And then a few days ago, literally standing outside my work before clocking in for the day, I hit a wall. I'm close to leaving my job because of the numerous challenges I encounter there. Feeling quite anxious and desperate I called my insurance and asked about any options available to me. I've had this insurance for six months, and it never occurred to me to simply ask. And now here I am pursuing a diagnosis. Tony Atwood has mentioned that older adults should really give thought to how a diagnosis might benefit them. Will it add anything to your life? Are you already feeling validated and valued from your self-diagnosis? As I mentioned in my last post, we should question how it might enhance our lives. But now that that door has been opened for me, it's hard saying no.

I'll keep you posted on how things develop. I'm waiting to hear back from my insurance company, after I complained about not being able to find an in-network provider qualified to work with adults. Legally I'm entitled to find someone out of network if there aren't any viable options, but I need to carefully screen providers, research their credentials, learn about their diagnostic process, and get verification that their services will be fully qualified. I'm definitely going to contact the online group you mentioned and continue to gather resources and information.

Thanks so much for sharing with me and helping me feel not quite so alone during this process.

Carla

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