Have Suspicions but Not Clinically Diagnosed.....Now What?
I suspect I'm autistic, I'm pretty sure I exhibit many of the traits, but for many (mainly financial) reasons I haven't yet gotten a diagnosis. Regardless, I'd like to let others know about what I've discovered. I don't think it's appropriate for me to say I'm autistic yet because I haven't been clinically diagnosed, so should I mention that I'm quirky, have autistic traits, etc.? Anyone here in the same situation? What do you recommend I do?
Finally, for those of you who have been diagnosed, what changed for the better or for the worst after you were diagnosed? Did you have additional help and accommodations because of your diagnosis?
*EDIT: I'm not sure I put this forum post in the right category, but I'd like to put it under a members-only category if possible*
Hi Robin999, you posted in the right place to ensure its seen by registered members only.
I appreciate your questions. I personally believe I have benefited from understanding that I am on the autism spectrum. There were numerous differences and communication challenges which I couldn't comprehend fully until after my diagnosis. With that said, I know other people who have shared with me that they feel a diagnosis will not change anything for them, and they are happy to remain undiagnosed.
This is my experience. I'm 60YO. I was diagnosed four years ago, about a year after I started having serious suspicions that I was on the spectrum. I sought a diagnosis because all my life I had trouble just navigating society, and especially with employment. I kept landing in jobs and work places that weren't suited to me. My parents stopped supporting me when I turned 18, in 1970, so with just a high school diploma, I kept ending up with co-workers who weren't the highest caliber people. Before long I would start having problems because I was "different."
The diagnosis has helped me a lot in my situation because I finally had an official answer for why I always felt so different and so baffled at how to get along with those around me. It led me to get involved more deeply in the Asperger's/autism community, and I discovered groups and forums like this one. I feel I owe Sharon and others like her a debt of gratitude for founding these groups. Now I know specifically what my challenges are and have been, what my strengths are, and how to work at overcoming the challenges and developing my strengths. I'm left with a lot of psychic damage caused by a childhood of neglect and abuse, and abuse that continued into my adulthood. But now I have a community of supportive people to help me with these things. This community has helped me to educate myself about the toxic people out there, and to better avoid getting caught up in their orbit, and to minimize the damage they do to my life.
I think that if you've been able to thrive without a diagnosis, then it probably isn't necessary, unless just having an answer is important to you.
Best of luck to you!
In a similar boat, I hear things like "too funny" or "too much empathy". I have no advice but look forward to some.
Let me offer a little advice that I hope is helpful (if it's not, please disregard). I had years of a deep depression and my psychiatrist sent me to a neuro-psychologist to see 'what was going on under the hood'. That's what the NP was asked - what's going on? - and the NP brought up Asperger's. It wasn't actually a diagnosis at that time since the question wasn't, 'is this AS?'
So I spent some time in the place you were out - with evidence that AS was a possible explanation but without a dx. On the advice of the NP, I educated myself about AS and figured out how my issues/experiences fit in with the Dx and tried out interventions. I pretty much got immediate results, improvements really, so I knew I was on the right track. I've since gotten the diagnosis.
So what to do in the meantime?
* Try describing yourself to others you trust as having "autistic traits" or "characteristics of Aspergers" that are causing a lot of "friction" or issues in your life, and that you're working through things. Then note that you've found ____ to be helpful, and then ask for support. A friend or loved one should be wiling to support you - dx or not.
* Describe things as they are but without the context of AS: "I have some sensory sensitivites," or "I'm having some trouble processing that/organizing my thoughts." "I'm sensitive to ____ and it's a lot handle right now, can we _____?" "I'd love to talk about this later, but I'm just having a hard time wrapping my head around that. Can you send me a quick summary by email and I'll get back to you?"
I've found that one can often have more difficulites with people in the long run if they don't address something than if they did. For example, I think it's more socially damaging to flip out and lose it at a party/in public beacuse you're overwhelmed with sensory stimulation than if you just excused yourself from the party before you lost it.
* Frame it as "I'm not sure which side of the line I'm on, but I'm definitely on the autistic side of things. But you know, autistic traits are human traits, and it's how you're affected as you go through the world that ultimately matters. I'm mean, if you're super sensistive to artificial light, you wouldn't have had a lot weird lighting to deal with 200 years ago, right?"
* Explore interventions for similar issues, including ADHD, anxiety, plus stress management, time management, etc. and increase your self care. Frankly, I wouldn't be surprised it's all somehow related. But as long as your life improves, does it matter exactly where the intervention came from?
* As an adult, much of the intial phase is all on you to gain the self-awareness you need to begin to articulate your needs and advocate for support. (And if you're a parent, you need to do that for your child and teach them to do that for him/herself.)
Fundamentally, you need to understand how you interact with the world. You need to know what causes the friction/anxiety/irritations and then you need to deal with it, one by one - be it sensory or cognitive, especially. (I find my social issues stem almost entirely from those two sets of issues.)
That self-awareness can be very powerful in and of itself. Many of us have to budget our energy throughout the day/weel/month or we'll become very tired, run down and burnt out - or melt down. Look up the "spoon theory" on living with a disability/chronic condition.
Here's the best list of characteristic's I've ever found (it's the big set at the bottom): http://www.josef.org/aspergers.html. I printed this out and checked off how affected I was, and I've used it to prioritize my interventions (not that prioritizing is easy).
Rudy Simone's Aspergirls book is awesome. Websites with explanations of AS can be helpful too. Keep a log of what you think matches up - it will help in the interview process if you go to get an dx.
* To get that self-awareness, in addition to the checklist, try cognitive behavioral therapy (CBT). (It did WONDERS for me so I'm kind of like a preacher about it.) There are workbooks on Amazon for $22 or less- the original is "The Feeling Good Handbook". CBT has nothing to do directly with AS (it does deal with anxiety and depression), but working at understanding what your thinking - the beliefs you hold and don't even realize, did wonders for me. I was plagued with, "but this should be easy for me ... but it's not ... so I'll try harder ... and now I'm burnt out, I'm so defective because I can't everything done."
If you see out a therapist, try to find one with experience with CBT & AS. I think that actually matters.
* On the insurance side, try to focus on dx for anxiety and depression if you also fit, if that's easier to get coverage. Both are super common in ASD individuals. Many of us can also fit an ADHD dx given our poor executive functioning. Ask around about what the advantages are for each given where you need support.
* Finally, if you're in New England, check out the AANE (Aspergers Association of New England). Their website is helpful too, no matter where you are. I DO recommend staying away from "Cure Autism" crowd and any parent focused group (especially those that exclude autistic adults). That POV is not helpful and actually can really hurt - you have the brain you have, there is no brain transplant option now or in our lifetimes, so you need to learn how to live your best life with the brain you have.
Okay, so I hope that helps.
That was a very helpful post and I will take much of the advice. Thank you!
There are ways to get around finances. If you look at disabilty services in your state, there may be ways to dianosed cheap/free. In Massachusetts it can be done through MassRehab, which is a service to help people get jobs and job training, or if you have Commonwealth Care, it can be done.
If you want a diagnosis, it can be done, it just takes a while to figure out how to finagle it.
I'm in a similar boat to you, but I almost have an appointment for neuropsych testing.
Um, I totally agree with what you said. Maybe you weren't replying directly to me?
I think there a tons of ways to view a person with "autism traits" and have messed around with different terms for myself including NLD (nonverbal learning disability), INFP (myer briggs), and empath (though it sounds super silly to call oneself an empath).
I'm choosing to get diagnosed, so that I feel 100% comfortable associating myself with the term if I choose to. Having a diagnosis doesn't mean that you need a cure, and being disabled doesn't mean you are less valuable.
I really think that it's the NT who have it rough. They have these weird beliefs, and it works for them, but they are like Wil E. Coyote, who runs off a cliff and doesn't fall until he notices that there isn't ground below him. If he were "autism spectrum" he would actually notice that he is running off a cliff.
Unfortunately, NTs appear to dominate the world, and it's up to manage their stupidity.
(*note* I'm not actually a jerk or NT-hater, I just use this language for impact, and because I think it's amusing.)
I was thinking about getting a diagnose myself, but it seems to be mission impossible in SE Asia. The only thing I could find about the topic was LFA/HFA in children, no word about adults on the spectrum whatsoever. But even if I could manage to get a diagnosis, I'd rather make it is "off the record", I would not want any authority to know. Otherwise, it would be just a confirmation of who I am, only decorated with a stamp and a fancy doc signature. ;)