Struggling with diagnosis

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Hello all,

I'm a 43-year-old man with two ASD kids (out of four kids). Having gone through a lengthy ordeal to get my son diagnosed with Asperger's (which happened prior to the DSM-V magically making Asperger's disappear), my background suspicion that I might be on the spectrum has grown into virtual certainty. This is partly due to research I've done in connection with my son's needs, and partly due to the similarities I see between how he is at age 11 and how I was at the same age.

My problem is that I'm "only" self-diagnosed as ASD, and my biological family doesn't agree that I'm autistic. I've been seeking an "official" diagnosis lately, both to prove to myself that I'm not completely nuts for thinking I'm autistic and to show my family that I'm not making this stuff up.

Prior to going in for formal testing, I self-administered the Adult Asperger Assessment created by Cambridge University's Autism Research Center. As I'm sure many of you know, the AAA combines data from three tests, the Adult Autism Spectrum Quotient (AQ), the Cambridge Behavior Scale, also known as the Empathy Quotient (EQ), and the Relatives Questionnaire. My scores were as follows:

1) On the AQ, I scored 44 out of a possible 50, with 80% of ASD patients scoring 32 or above;
2) on the EQ I scored 7 out of a possible 80, with 80% of ASD patients scoring 30 or less;
3) on the Relatives Questionnaire (which is admittedly not valid when self-administered, as my answers were based on personal recollection, not the observations of my family), I scored 24 out of a possible 31, with 87.5% of ASD children scoring 15 or more.

The Excel spreadsheet for the AAA combined the data from those three tests, breaking questions down into appropriate domains based upon the diagnostic criteria being assessed:

1) For the social domain I had 3 of the 5 possible symptoms;
2) for the obsessions domain I had 4 of the 5 possible symptoms;
3) for the communication domain I had all 5 possible symptoms;
4) for the imagination domain I had 2 of the 3 possible symptoms.

In total the test data indicated that I have 14 of the 18 possible symptoms, with the minimum threshold for ASD being 10. I met all 5 of the prerequisite symptoms.

I requested a battery of autism tests from my psychologist. This led to two sessions, the first involving standardized tests, and the second involving a one-on-one evaluation meeting with a psychologist. The first session was fine, though it didn't look to me as if the tests were relevant to autism. During the second session I learned that none of the tests I took had anything to do with autism. Naturally, that was very frustrating, since I had specifically asked to be tested for ASD.

I brought a copy of my AAA results to the second session, but the psychologist disregarded them. In follow-up emails she stated that only the "gold standard" tests would be considered, as in the Autism Diagnostic Observation Schule-2 (ADOS-2) and/or the Autism Diagnostic Interview-Revised (ADI-R). I'm the process of trying to schedule those tests, but finding a provider who is on my insurance is taking some time.

Unless ADOS-2 and/or ADI-R are fundamentally incompatible with the tests in the AAA, I don't doubt that the results will show ASD. What worries me is the family questionnaire, because my mother doesn't agree that I'm on the spectrum, and neither does my oldest sister (who spent as much time caring for me as my mother did). My mother says I'm "just depressed." Neither one of them says that they observed any of the autism traits that are supposed to manifest by age three. If they receive the questionnaire, their answers will counter the diagnostic criteria and prevent a finding of ASD.

When I review the questions that get sent to family, my recollections support the requisite criteria (I can remember sporadically as far back as age three, and clearly from age four onward). The sticking point is the onset by age three. I didn't miss any early childhood milestones (according to my mother) and I didn't "regress" at age two-three, as many ASD people do. But I DID undergo a dramatic personality change right as I was turning three.

I contracted typhoid fever and wound up in the hospital for several weeks. According to my sister, my fever went as high as 106. She's always told me that prior to the typhoid I was a calm and cooperative baby and that after that fever I was suddenly very hyperactive. In her mind, that change was due to the fever. The thing is, I've researched typhoid and none of the materials I've found indicate personality change as being an effect of the disease. From what I can tell, a fever needs to go to at least 108 before any kind of brain damage can occur. It doesn't look like it's medically possible that my personality shift was caused by typhoid.

From what I can tell, autistic traits can be manifested as apparent ADD, which includes hyperactivity. I know for a fact that I have ADD (officially diagnosed as of 2003), and I know that going as far back as first or second grade my teachers were asking my mother to put me on Ritalin. It seems to me that maybe what happened is that my ASD traits emerged in the form of the sudden hyperactivity, and that masked the underlying autism. In other words the fact that I'm ADD concealed the fact that I'm also ASD.

Given my family's opinions, I really wonder if it's worth it to go through with JDOS-2 and/or ADI-R. It's a very frustrating dilemma.

Any thoughts that you guys might have regarding how best to proceed would be much appreciated.

Regards,

NOLAjedi

Last edited by NOLAjedi on 10 Nov 2015, 12:53 pm, edited 1 time in total.

Please don't view this as antagonistic, because it isn't meant that way, but why are you so insistent on getting diagnosed? I am not suggesting you shouldn't be, but what do you plan to do with that information?

If it's not too late to edit, please take your name off that post. Real names are best left off of Internet forums.

I'm insistent on diagnosis for ADA purposes. I've had multiple job issues related to ASD, and if I had a diagnosis I'd be able to request accommodation under ADA. Without the diagnosis there's no duty to accommodate.

My other reason is I need to KNOW. I've spent umpteen years in therapy not receiving any diagnosis because the shrinks can't sort through the co-morbidities. The best I've gotten is for a shrink to tell me "your case is complicated." Frankly, I want something concrete and scientifically verifiable instead of all of this "could be A, could be B, could be C, could be all three" nonsense.

Lastly, I'm tired of being questioned when I talk about being autistic. Some people won't just accept my analysis (which is based upon years of independent research, observing my autistic son, and living inside my own skull for 43 yeas), and this causes friction when the topic of autism comes up. Having formal medical records might (hopefully) shut some of the doubters up and make them listen.

If this service cannot be rendered with expertise within your network, you have a right to have the service paid for outside the network. So be more concerned with adult autism expertise and not with "in network." It will have to be pre-authorized, I'm sure, but if they say it can be done in-network, make them prove that the provider they favor has the expertise.

You ideally want someone experienced with adult autism diagnosis, but I was diagnosed by a child psychiatrist.

If you can't find someone to administer those two tests, another option might be the training clinics associated with clinical, counseling, and educational psychology programs.

Don't worry about the parental and/or sibling reports being answered in a biased way. If they show nothing at all, you can discuss the validity with the diagnosing professional. But well constructed tests should be able to pull out a valid response in most cases, even with a biased reporter. (In other words, they shouldn't be too obvious.) Very often, a family does not want to see a problem in the family structure - the proverbial elephant in the living room - and in fact, may feel threatened as to what your status says about them. Even after you get diagnosed, you may not feel they accept the diagnosis.

I'm not sure your present psychologist should have the final word. Not every professional has strength in every specialty.

Good luck.

Last edited by BeaArthur on 10 Nov 2015, 2:15 pm, edited 1 time in total.

jedi,

I totally understand where you're coming from. I wish I had pointers to help you in your journey, but alas I do not. I can only offer solidarity at this time.

The struggle you're having with your family accepting your self-diagnosis is sadly pretty commonplace. Even after getting a professional to assess you, agree, and diagnose you as ASD, there's a pretty good chance your family will still reject the diagnosis. There's just an overarching stigma against Autistic adults because for years ASD has been focused as a childhood affliction. After all, it was once thought of as childhood schizophrenia. That mindset, sadly, hasn't progressed in the many years since. These are the things I tell myself as I, too, struggle against pretty much the same reaction from my own family. The disbelief simply comes from them not being familiar with how wide the spectrum is. Being professionally diagnosed a couple of years ago, I can tell you that you'll probably come up against the same pushback after you get your paperwork. It sucks, but it's likely true.

Really, I think your second reason for pursuing diagnosis is your best one. [Disclosure: I can't speak from experience as to ADA requirements (as I have yet to formally request them from an employer). It sounds like your pursuit of professional diagnosis in this regard would be fully warranted, in that case.] I only lived 30 or so years as an undiagnosed Autistic, and it was awful always wondering why nothing seemed to fit. Finally having that answer was a relief. That, alone, makes this pursuit worthwhile. Again, I don't have any pointers for you. I really wish I did. But finding the answer solely for your own piece of mind (and, further, to better understand your son and advocate on his behalf) is a worthy endeavor, and I wish you the best of luck.

Just don't be surprised if you still get resistance to the idea after gaining that diagnosis. "Haters gonna hate," if you will.

----

As an aside on BeaArthur's comment about real names: Your name is common enough that I wouldn't be too worried about it. Besides, I don't see being completely open here as a bad thing. Of course, I "came out" as Autistic in my local weekly paper, so YMMV.

Actually, I was wrong. I may be able to assist.

Seconding Bea's points and adding on. For my diagnosis, I found a local psychologist who listed ASD as a specialty on my healthcare provider's physician search database. There wasn't any specific mention of age range. I realize I am extremely lucky to have found someone in my network with extensive ASD experience (30+ years) who didn't solely see children. However, my main point here: When he bills my insurance, he codes the sessions under my co-morbid conditions of anxiety and depression. If you can find a psych who would do the same, it may expand your available options for providers.

Hope this helps.

Thanks for the feedback, guys.

I think part of the pushback from my family is that we do have a pretty extensive history of mental health issues, most of which have never been fully diagnosed but seem to have some relationship to anxiety and/or depression. So when I start talking about autism my sister is hearing it as me trying to find something "wrong" with us. When I mentioned that part of why she may not have noticed my traits could be that she's on the spectrum herself, she lost it and hung up.

For the record, I have four sisters and a brother. We were all categorized as "gifted" when we were kids, whatever the hell that even means anymore (in our cases it was academic and creative). I've suspected for years that those we call "gifted" are extremely closely related to those we call "autistic." Not a popular theory with my family. When I saw "Rain Man" with my mother I came out saying that Raymond was a Giftie. Totally p155ed my mom off.

I am pretty certain that my brother is HFA, and even my mother agrees in his case. But he had the more overt speech delays, and was suspected of being developmentally disabled until age four or five when he started using complete sentences. He's an engineer, gets way overly-detailed if you ask him about his work day, never socialized much with anyone, has no longterm friends other than his wife, and hasn't spoken to any of us in eight years. Genuinely not interested in being connected to the rest of the family.

I don't see any of the traits in three of my sisters. Other stuff, but not autism. With my oldest sister, she's extremely intelligent (smarter than me, I think) but almost entirely non-social beyond her husband and kids. Very black or white in thinking, very direct and to the point (often called pushy or blunt), very literal minded. I'm not solidly convinced in her case, more somewhat inclined to suspect.

What I can't get them to see is that I don't see autism as something "wrong." I see it as one variant among many, which presents some advantages and also some difficulties, just like all other personality types (neurodiversity, in other words). When I say I believe I'm ASD it's not about believing something is broken or messed up or wrong. It's more about understanding what my strengths are, as well as identifying my weaknesses and blind spots. I used to think I was angry all the time, for reasons that made no sense even to me. When I realized it wasn't anger so much as constant low-level anxiety either from stimuli or from the stress of trying to interact with people without butting heads, it was a giant "ah ha!" kind of moment. It made quite a lot of things more comprehensible to me.

When my son was finally diagnosed, after more than two years of serious struggles at school and in social settings, including repeated threats of or attempts at suicide, I didn't feel the sense of grief that some parents of ASD kids have described. I didn't feel like I'd lost the son I thought I had. I felt like I had a better idea of who he was, or more specifically what he needed from us and from the world. My daughter is extremely subtle in her presentment of ASD traits, and our concern with her has only ever been lack of awareness of her situation. So I didn't feel any loss when she was diagnosed, either.

If I hadn't already gone through having two kids diagnosed, I might have felt differently about realizing that I'm ASD. I might have fought against my own intuition more. I might have grasped at whatever alternative explanations were available. But knowing my kids, loving them completely, and being fully aware that they are ASD made accepting it within myself much easier. I love everything about them, so loving the autistic part of myself was a hurdle I could clear.

What you just wrote about your kids is kind of beautiful, NOLAjedi.

But don't expect your family of origin to be so open minded.

Wanting validation and/or clarity is surely enough reason for someone to undertake formal diagnosis, given that there is a heap of material regarding how invalidation (especially of factors intrinsic to the person, like inherited characteristics) can impact very adversely on psychological and emotional well-being.

Generally, emotionally healthy adults want as much clarity in their lives as possible. If that means seeking diagnosis then pressure from any source to justify your choice is hard to reconcile with respect for the choices you are entitled to make about your own life and self.

I know that many undiagnosed adults are sick and tired of their diagnostic dilemmas/choices being trivialised, discounted, ignored by family members, questioned by bystanders - they have told us so here often enough, before and after formal diagnosis. I feel very sad when I read (again and again) posts like yours, OP.

I wish more Autism parents were like you. Then again, being ASD yourself really gives you an empathy for your childrens' experiences, which is something I don't see enough of in the Autism parenting community.

Your story is very familiar to me. I see a lot of parallels with my own experience. It wouldn't be wild speculation to think that your family is firmly entrenched with BAP in the lineage. It might be a better avenue to gaining their acceptance if you suggest the BAP angle -- that your family is simply genetically predisposed to potential ASD -- rather than starting with the spectrum. I'd like to think that more intelligent people such as your family would be able to discern what could be construed as a personal attack centered on observable behavior ("I'm Autistic, and I think that you are, too.") from what is a more neutral observation centered on something out of everyone's control ("My child is Autistic, I think I might be Autistic, and I think we carry genes for Autism."). But again, part of this struggle is just general ignorance on ASD.

I would extend a warm welcome to WP, but you've been registered here longer than I have. So I simply say that I hope you keep us abreast of your progress and consider sharing more in this community in the future.

Broad Autism Phenotype? Hadn't come across that one before.

As for it being in my lineage, I'd say signs are pretty good in that direction. If you have a large group of related people, none of whom are very inclined or have much ability to be social; all of whom present some form of anxiety-driven behavior; most of whom are very "black or white" in their thinking; and many of whom are either scientifically or mathematically inclined, it's not unreasonable to infer the presence of BAP in the gene line. I'd say it's all the more reasonable when there are already multiple family members with formal ASD diagnoses.

To me, the difficulty in obtaining a firm diagnosis for ASD seems indicative of some inherent weaknesses in the field of psychology. For any given condition or disorder, diagnosis is only achievable through observation of objective behavioral traits. If an individual presents a sufficient number of traits that correlate to a given condition, then that condition gets diagnosed, or at least it can be.

The problem is, correlation is not causation. We never know WHY someone presents any given trait. Is it something intrinsic to their personality/neurology? Is it a learned behavior? Is it a response to life events or circumstances? We have no way of knowing. Traits associated with autism can be seen in people with OCD, bipolar disorder, ADD, Borderline Personality Disorder (to a lesser extent) and in people considered "gifted." Is a given behavior due to autism, or one of those other conditions? Perhaps more than one? Maybe ALL of them? It's almost impossible to say with any certainty.

Then there's the whole issue with masking of traits. It wasn't until I really started digging into the ASD literature that I realized that I've been fighting the urge to stim for decades, so much so that I wasn't even recognizing the urge. I do stim in subtle ways, like grinding my teeth constantly (which I also didn't know, until they started breaking from the stress), chewing my nails, chewing ice, etc (pica seems to correlate strongly with ASD, as does bruxism). I sat down and consciously tried to "let go" of the suppression, and found myself spinning my chair back and forth in a 30 degree arc (roughly) and thinking "Hey, this feels GOOD." I wasn't aware of how much eye-contact stressed me out until I stopped forcing myself to do it. Talking to someone while looking elsewhere feels INFINITELY better than doing so while making eye contact. So I've had these traits all along but have suppressed them in an effort to mimic neurotypical behavior.