Getting diagnosed as an adult...

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I'm 28 and I recently realized that I very likely have Asperger's. I never considered it before, but by studying someone else with autistic traits it gave me the hunch. Once I realized, it explained a lot. Despite the fact that I managed to get myself through college and even ran a successful business for a while, it's been rough, and I've been in freefall the last couple years.

I'd like to be sure about my autism. I realize that diagnosis by specialist is nothing to be excited about, as it may bring some professional and legal difficulties later, but I feel that it may be necessary for people around me to accept that it is in fact what has plagued me all this time.

What specialist do I need to go see? What are the best self-diagnosis and self-help resources I should use? My parents will likely be in denial. How do I handle denial? Will my parents disown me?

Help is appreciated, thanks.

First of all, welcome to WP and congratulations on the start of this journey. Taking the first step in realizing that you may be on the Spectrum is huge and it is a very good thing to realize and understand. Secondly, the cloudfare Captcha is a hopeless cause. Just try to deal with it without throwing your computer across the room and ripping your hair out. Sometimes I just yell and scream and occasionally swear. But if you write something significant, copy save it first in case the Captcha starts acting a fool and you end up losing what you wrote.

Now, about seeking a diagnosis, I am sorry, I did not take a look at your location. If you are in the UK, or in not in the US, it is different than in the US. In the US, an adult diagnosis can be very expensive and not every insurance will cover it. That is the first step: if you have insurance, find out how much, if any it will cover. The insurance I had at the time covered nothing but fortunately for me, I was not employed so I was able to go through the Office of Vocational Rehabilitation, I am in the US, and I was able to get a diagnosis free of charge. In the US an adult diagnosis can be in the thousands.

Next, don't bother trying to get imaging. It is very expensive, probably won't be covered for that reason under any insurance and it is absolutely not necessary. I don't even know if the technology is advanced and accurate enough to really be useful to you anyway. It might be but I just personally do not know. Look for a person who specializes in adult diagnoses and it is best if you find someone who knows how to tell the difference in the genders for adult Autism diagnoses. Females often present differently than males. Fortunately you seem to be male. I say seem to be because in the past people have had trouble with this website automatically saying they were male when they were female but that issue may have been corrected. But it is easier to find diagnosticians who understand how to diagnose males than it is for females to find people who know how to diagnose females.

If your parents are in denial or clueless and if you feel they won't be helpful at all, I would leave them out of it. When adults are diagnosed, sometimes the parents are already deceased and sometimes they are unavailable, or not suited to the task for other reasons. It is pretty common for an adult to get diagnosed without the parent's involvement. The parents are used to provide childhood memories that show that the traits and symptoms were present in early childhood since that is a requirement of the diagnostic criteria. But with adults who don't have their parents to do that, usually they have clear enough memories themselves and that works out fine.

One thing I did which really helped was that I read The Complete Guide To Asperger's Syndrome by Tony Attwood. I was diagnosed a year and a half ago at the age of 47 and I left my family out of the process because I knew that they would be in denial. Tony's book is very comprehensive. It is written for teachers who have Autistic kids in the classroom so it talks about pretty much everything. It is about 400 pages but it is actually a quick read. I read it twice in two weeks. As I read it, every time I read something that I could relate to, which was almost everything, I wrote down the paragraph and page number and then I wrote exactly how I related to it and how it applied to me. I wrote down everything I could remember from my very earliest memories as a young child all the way up to my most recent adult memories. I put those notes on a thumb drive and gave them to the diagnostician. I was later told that that was an invaluable resource and extremely helpful to them in the diagnostic process. They also gave me an 8 hour battery of tests, all in one day, which were very comprehensive as well. So when I got my diagnosis, I was absolutely sure that they had gotten it right. Reading Tony's book gave me huge insight and understanding into myself as well. So much so that when I went in to do the testing, I was 99% sure that they were just going to confirm what I already knew.

I had also spent the previous 18 months researching Autism/Asperger's in a typically Aspie fashion, meaning that I was completely obsessed and engrossed in the research. I took every single online quiz that was available to take and I printed out the results of all of them and gave them to the diagnostician as well. And it was during that 18 months of research that I found WP and became a member. I was a member for over a year and also learned a ton here before getting my diagnosis. It was great being a member here during that time because I made some wonderful friends here who were amazing and who really supported me and helped me through the diagnostic process.

But I think the single most helpful thing for me were the notes I took from Tony's book because they were so incredibly detailed and comprehensive.

As far as whether or not a diagnosis at your age would benefit you, I know it would not affect things like driving and clearances unless you wanted to join the military. I am not sure about the military. I know that for me, it has no affect on my driver's license or any of the clearances I have, regular criminal background checks. As far as firearms, I don't own one and never will so I have no idea about that. But remember, you are not obligated to disclose your diagnosis to anyone. It is 100% up to you who knows and who does not know. It will not even be in your medical record if you don't ask for it to be put there.

I have found that for me, it is helpful because I am in Special Olympics and it is only because of my Autism diagnosis that I am allowed to be an athlete. Special Olympics is extremely important to me and that is the main reason I got an official diagnosis. I am also finding it helpful because I am trying to get work now and because of my diagnosis I am eligible to get help with that from the Office of Vocational Rehabilitation. I had worked for many years before but was never able to keep work for any length of time because of my issues with Autism and Misophonia. Now that I know I am Autistic and Misophonic, I understand these issues and why I have them and I can get help from an employer to help meet my needs. I had not worked for over a decade because I was just being a housewife but we have fallen under financial difficulty so now I have to try to get work again. If I did not have my diagnosis, getting work without the help of OVR, would be nearly impossible for me now.

I am also eligible to apply for Medical Assistance for Workers With Disabilities now that I have the diagnosis. That is a big deal because we have no insurance now since my husband lost his old job and his new job does not pay enough for us to afford insurance in the Marketplace but pays just enough that we can't get Medicaid. So we are kind of in a tough spot with that. But if I can get the MAWD, at least I can have a form of Medical Insurance. So having the diagnosis will hopefully get me that. They do have other criteria for that that I do not meet because of my past work history so I might not be able to get it but hopefully I will since without that I have no other options available for medical insurance.

Even though I am very "high functioning." I hate those labels because they are really deceptive, I am still severe enough in certain areas that I still require support and I have never been able to live 100% independently. I don't need someone to physically live with me but I have never been able to work enough to completely support myself financially because of my issues with Autism and Misophonia. So the diagnosis is helpful to me to get help in a work place environment.

But you have to see what benefits would be available to you in your area and if it would be worth it for you to have them. And sometimes the greatest part of having a formal diagnosis is the closure, peace of mind and validation that it gives us. I know that for me, that was HUGE. So those are all reasons to consider. But you are the only one who can decide if the formal diagnosis is best for you. Self diagnosis is fine too if it is enough for you. There are many arguments and debates about that subject and if you look it up here you will find threads about it ad nauseum. But considering the cost of an adult diagnosis in the US, not everyone who wants one can afford one so it is important for people to understand that and not judge others harshly if they simply just can't afford to get one. But again, the decision about that has to be yours and yours alone.

I hope this helps.

But only you can know and decide if a formal diagnosis is worth it to you. You have to weigh the costs of getting one and see if

I was dx'd as an adult after seeing a therapist for an anxieties. Over time she had her suspicions, mentioned them to me and asked if I was interested in finding out. I was and she set it up. The only thing it did for me was explain lots of big issues I had when I was younger that I have learned to work around or overcome, and explain why I have such bad meltdowns, what they are, that brings them on and how I can watch for and avoid them. That is literally all it did.

So, if you want to know for sure then go to a psychiatrist or clinical psychologist who is part of a group with MDs, and talk to him. Tell him your issues, tell him what you suspect, and then follow his lead. I don't know if your insurance will or won't cover it. I don't know the degree of severity that your symptoms are so I don't know if a dx would help you because it allows you to get accommodations, i don't know if you need them or not or would even want them. I would neither need nor want them but that's me.

If you have other issues I'd urge you go see somebody. You can bring up AS then. Decide what you would want and need from a diagnosis and find out about insurance. Talk to the therapist too. If you are doing fine then a dx won't really do much for you except explain things and give you ideas to manage it. If it's important to you to know, then by all means talk to someone. The starting point is a psychiatrist or clinical psychologist in a good group, IMO. You mentioned PTSD so maybe you have someone already. But that is who tostart with.

Also remember that while it's fine to assume you have it, only a medical professional can actually diagnose and many things can seem like AS.

Good luck

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I'm giving it another shot. We will see.
My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA.

The link to the forum is http://www.rightplanet.proboards.com

Thanks!

I have been to 3 different shrinks years ago within a span of a few months (10 years ago last time). I was brought in by my parents because I was having trouble focusing on academics in school. The longest I lasted was 2 sessions. The shrink just sits there with a notepad, and I'm not much of a talker. I was very uncomfortable, and the time was always up before I got anything useful out of it. (What a useless occupation!)

Well yeah, it would be great if I could get my insurance to pick up part of the bill for specialist's services. I might have to call in and get the services pre-approved. What should be the title of the correct specialist?

I read somewhere that specific instances from my life demonstrating the autistic traits were desirable, but I was hoping the specialist has a way of making the determination without specific input from me, as to not taint the experiment. I don't want the shoe to fit if you know what I mean, but if it does, the specialist should know. This way I feel it will be easier for my parents to accept the diagnosis.

A few years ago my mom mentioned that I did have something of an autism as a child but it seems she has since backtracked on that. At the time I was the one in denial, I would not believe that my rational, logical, structured and sorted mind could have a flaw, but I didn't know much about the condition back then. I thought it was something like down syndrome, and I wasn't interested in any further details. I made the realization recently while studying someone else with autistic traits. Over the last few days I randomly asked about mental health of extended family members (I wanted to know if perhaps there is something genetic), and mom asked me if I think there is something wrong with me, and she got really defensive about her parenting (even though that wasn't the subject). I didn't say that I suspect anything (actually I'm quite sure of it).

I don't want to obsess with it, I just need people around me (including a potential significant other) to accept that some of the flaws aren't character flaws, and I really am trying to do better.

Glad to help.

Find the specialist first and let them help you do the preapproval with insurance or let them do it themselves. They have to give the insurance company a specific code and you won't know the code. Look for someone who can give you a full comprehensive test. Some diagnosticians will just sit and talk to you and for some that is ok. For me I was really glad to have the full tests because they revealed things that could never have been known had I not taken them. I actually found out that I was much more Autistic than I had ever suspected.

Don't be afraid of providing your own memories. That is really helpful and it is important. Examples from your life and childhood give the diagnostician a picture of how you are in your daily real life. This is something that they cannot see on their own. And if you have trouble expressing yourself verbally sometimes, writing the memories down will really help. You do write well and may be able to express yourself more accurately that way. But this is a big part of getting a good and accurate diagnosis. Remember that Autism is a neurological disorder and the criteria for being diagnosed is specific. If the shoe fits it will fit. The more the diagnostician can know about your daily life now and in your childhood, the easier it will be to make an accurate diagnosis. You want to give them as much information as you possibly can to make sure that it is accurate.

You don't have to tell your mom or anyone else what information you give them. Because of your age, the process will be confidential and your mom will never be allowed to find out the details without your permission. I understand your reasoning to want to have the results just from testing without input from you but it is much better to have the input from you. A competent diagnostician can tell if the information given is good and helpful or not. And the tests, at least the ones I took, are designed so that you cannot fake them. If you find someone who is competent and you get the full battery of tests, you will not be able to fake it. And faking it is not your intent anyway so you don't have to worry about your memories tainting the results. The only thing they will be able to do is strengthen the accuracy factor.

As far as your times with the shrink, I totally understand how it is difficult to get things out verbally in that short period of time. I like to email my psychologist whenever I want to talk to him about stuff between our monthly meetings. HIPPA rules say that he can't help me and respond with help via email but that is okay with me. He lets me know that he has read what I have written and so if I end up nonverbal when I see him, that happens sometimes, he is still able to talk to me and help me and encourage me because he has read my emails that I have written to him before I got there. If you do have a regular therapist again, that might be a great way for you to be able to communicate with him or her.