"I'm Not Autistic Enough"

[Pinkie B]

Hi All,

Been obsessing over this forum since I first joined. I had this very strong shock and emotional resonance realizing that I might be on the spectrum a month or so ago. I identified with just about everyone here to some degree or another and just felt like OMG THAT'S ME! and YES! THAT! to basically everything that people were saying. It was a great feeling to finally find people who are like me.

But as I've been reading more and the initial shock is wearing off, I'm starting to feel like maybe I'm not autistic enough? On the one hand, I don't want to be disabled. I don't want to play life on a harder setting. I don't want to live every day knowing that I will never be able to check my mail in a timely fashion and that I will forever be a slave to my routines.

But then, on the other hand, I don't want to be alone. I don't want to go back to being that weirdo who just has all these things that are hard or that have to be a certain way or that other people just don't get and I'm tired of explaining it to them. I don't want to go back to thinking that I have to be as productive and functional as everybody else or that it's my problem that the world is getting noisier and noisier and unexpected sounds leaking into my home can shut me down for days making life miserable and getting anything done plainly impossible.

I don't want to define my life by what I can't do and I don't want to start talking about myself as "needing to stim" or "having another one of my meltdowns" -- I don't want to change how I think about myself, but I feel like because this is how other autistics talk about their worlds that if I don't, then I can't be a member of the club.

I have toyed with the idea of getting a formal diagnosis but while I'd love the affirmation of this very intense affinity towards the autistic community, I'm afraid because I've accomplished so much in my life that I would be told that I'm too functional to be disabled.

::sigh:: I feel like Mononoke Hime: Not truly human, but never able to be completely a wolf.

 

[Fino]

I don't use the word "stim" or "meltdown," but if those are just small examples of a greater point then I guess that's not helpful, but I don't know what else to say.

Just be who you want and how you want it! That's what I do! It's so awesome!

 

[H-Kath]

You're not alone and you don't have to think about yourself in a way you don't want to. You've found people that make sense. Whether or not you do get a formal diagnosis, that's not something to give up. The shared experiences you've found here won't go away. You've found a community.

I'm in a similar situation where I'm still figuring out what to do about a formal diagnosis. Everyone here seems to understand my issues. I keep reading things that describe my experiences and this is a place where I've been able to have consistently positive interactions with people.

When I gave my presentation on the research I've been working on concerning emotional speech in Autistic adults both of the classmates I suspected are on the spectrum volunteered that they are in order to give me some feedback. That means three out of eight people in that class are either looking into assessment or have been diagnosed. One shared that he didn't start speaking until he was five but his family was able to get him the help he needed to become a polished lecturer well on his way to a professorship. The other was an undergrad in a graduate level class that thought he was presenting later in the week but managed to pull it off without cards, a poster or a powerpoint. My point is that your achievements don't rule out autism. One of the things I've learned since coming here is just how much Autistic people's talents and abilities vary.

 

[SusanLR]

You don't have to identify yourself to any certain traits or if you meet enough of them to be in "the club."
It's not a club. Everyone here is so varied. Some have been diagnosed on official paper, others haven't.
Just finding a group of other people with whom you can relate is just relating.
We all find those who may speak about something that we can relate to more than others.

On the one hand, I don't want to be disabled. I don't want to play life on a harder setting. I don't want to live every day knowing that I will never be able to check my mail in a timely fashion and that I will forever be a slave to my routines.

I don't want to be disabled either or live life on a harder setting. But, in certain areas of my life, I am.
That's ME. You are you.

I don't like being lonely either. But, I am. Because I can't connect with others in life.
Being here, connecting with others that I feel I can be open with and not judged helps me feel
not so alone.
Feeling you can identify with others on the forum doesn't change who you were before you found
the forum. You are still you.
There is no such thing as too much or too little autistic and there's no just right place on the spectrum.
Most of the things I feel you think of as negative identity issues are probably just someone who is
venting.
This is a safe place to do that. I wouldn't vent about ASD issues that are making me feel bad except
with my therapist or here. I have a lot of thoughts going around in my head at any given time,
but I don't have anyone I would want to share those thoughts with in my life except a therapist.
Being here, sharing and reading about other people isn't your identity.
It's a place to socialise on-line. In my case, because I don't have friends or family.

 

[Sarah S]

I agree with H Kath & Susan here 101 % and can bacikly only add

EVERY person with ASD or any Neoro Psychological diagnosis or like in my case multiple. Is HIGHLY individual in the way said diagnose present its self. So you comparing youre self to others in here wont be accurate my friend nor will it help you in any way shape or form (and YES when i first came in here i was the same as you even with my official ASD diagnose ) we are all individuals my friend (HUG )

Just accept who you are and youre diagnose as IT IS and be HAPPY & PROUD that you managed to come further in life then others with this diagnose my friend

 

[shysnail]

I think it's worth remembering that autism as an officially obtained label doesn't have the effect of freezing you in time as soon as it's applied. I'm being farcical and I know that you don't think it does, but it's a useful thing to remember that autistic people grow and develop just like everyone else. You're no more bound by your struggles if a doctor tells you that you're autistic than if they don't.

For me, being diagnosed initially gave me that impression, that I was in this box, limited in what I could do. And that's true. I am limited in a lot of ways. But it's not the diagnosis that limits me. It's who I am. And everyone is limited in some ways. It's up to you whether you consider yourself disabled if you have an autism diagnosis, so if that doesn't sit right with you, that's fine.

Engaging with the diagnosis and the autistic community has been, without a shadow of a doubt, the most positive thing I have done for my mental health, because the struggles are there regardless. Just having a name for them and a community of people that share them has helped me feel like I'm not a bad, failed person. I'm an autistic person getting by as best I can in a world not built for me.

In terms of the language, pick up what you want, discard what you don't. You don't need to buy yourself a fidget spinner and start talking about stims and meltdowns if you don't want to. Unfortunately for those of us who love rules, autism doesn't come with any

 

[Gracey]

@Pinkie B

I went through the first stage of an assessment yesterday.

It may well have taken the best part of three years for me to make the decision to go ahead with it.

My doctor referred me onto an NHS waiting list for assessment. NHS being notorious for length of time a person may wait meant that I still had a choice.
Go for it, or leave it. Didn't have to decide any time soon.

It was about 11.30 yesterday morning, (appointment for assessment two hours later)
I made the decision to go for it. Hell, I practically dared myself in that moment.

My hesitancy was for many of the reasons you've mentioned above.

Some but not all of symptoms or daily struggles.
Have I done or achieved too much in life? Not academically but along other routes, development, family, certain jobs etc.

In comparison with two other wider family members ; each at opposite ends - one requires 24hr care, the other astounds me in his comprehension of systems, (planetary, numerical, written word - he's four years old)


I ask myself if I've landed somewhere in the middle of the above or,

How I might have the audacity to apply to 'wear the t shirt' when; according to some family members, I'm nothing like the two mentioned above,
and I'm female,
and I've got this far.
So why make such a big fuss about it all?...

(...because the cost is to great to continue in the same vein.
I'm weary.)


It may be that I'm not autistic enough to wear the t shirt ?
I will crawl back under my rock and let that assimilate until reaching equilibrium...
I think

 

[onlything]

There is a reason why it's called a spectrum. You don't have to identify with all of the quirks or issues mentioned on the forum. We're people. We're individuals. We're different.

Above everything else, as others said, you're yourself. There's no reason to change yourself to fit preconceived notions or to 'fit in more'. You already fit in.

 

[Monachopia]

I often feel like you do - that "I'm not autistic enough"... but, having said that, people's experiences with life on this forum have largely resonated and made me realise that there is a whole community that is *finally* like me. I've spent a large portion of my life assuming that I'm just weird when comparing myself to my peers. I've had to make so many excuses for my behaviour without really knowing why I am this way or how to fix it.

Having said that, I also don't relate to a portion of the behaviours here - I don't stim, I don't have meltdowns - they're more "shutdowns" when things get too much. Processing just stops for a while until I find the energy to keep going.

Some others have written that receiving a diagnosis seemed to halt everything, that there was suddenly a box limiting any coping processes with "hard things"... but, further, there is the reaffirmation that you are still the same you as you were before you came to the autism realisation. You did the best you could and still do with these things. We find a way to make things work - sometimes things get easier with repeated attempts. You are not limited by the diagnosis until you, yourself, put a limit on what you can do.

As this is a spectrum, we're all different in what we can handle and how we cope. There is no prescribed way on how to "act autistic" or what a person on the spectrum can achieve or do. You are doing the best you can and that's what matters.

 

[Bolletje]

Some days I feel like I don't "deserve" the label because I blend in so well, some days I feel severely disabled. I've just learned to accept that no two days with autism are alike, but I am on the spectrum whether I like it or not.

 

[Nervous Rex]

Great insights and perspectives offered by everyone here. This is exactly what I love about this forum.

Don't worry about labels and terms. Focus on what works for you. My diagnosis and this forum have helped me stop trying to function like everyone else and start learning what works for me. You could go for a formal diagnosis, but you don't need one to start learning what works for you.

There are days when I think that maybe I'm too high-functioning to fit in here. And there are days when this forum is like a lifeline to me. In both cases, I've found this forum to be accepting and helpful. If you're getting useful information and perspectives here, then don't worry about whether you're diagnosed - just come and get what you need.

If you don't want to use the word "stim", or any other lingo, then don't. I just tell people that I can't ever sit still and always need something to fidget with. And I don't say anything unless someone comments on or asks about my behavior, which is very rare. You can talk about individual traits without saying, "Because I'm autistic...".

 

[Suzanne]

When I first joined this forum, I felt pretty much as you do now. In fact, I felt a fraud and kept posting questions with: I do not have a montoned voice. Etc etc and the feedback was so heartwarming that I began to feel ok and especially as I thought I would never get the chance of a formal diagnosis.

Guess what? I am leaning towards grade 3 which is on the severe end of the spectrum and the reason? Because I cannot function outside on my own, due to agoraphobia. I cannot work etc and thus, they consider me bouncing towards that level, but to look at me and in my home, you would NEVER guess I have asd. Well, perhaps after being in my company for a while.

I am registered as disabled and in truth, that is a "hard pill to swollow. The trouble is, I cannot function in the way I am and doors have been opened to me, due to being registered as disabled, so I have to learn to accept it.

The condition for being on the asd spectrum ( that is what I come under), is related to childhood experiences. Since it is from birth, then obviously there has to be behaviour patterns and although I my husband was not with me in my childhood, his view on me, had a profound effect on the therapist and I noted that he wrote feriously when I mentioned being fantastic at accounts, but lousy at maths. That I learned to read at 9 and quickly was an excellent reader, to the extent, I received a certificate. And other things.

 

[Tom]

I went thru most of life not knowing I was autistic. I didn't know HFA even existed. I went thru being that 'different' guy in quite a few ways. When I realized I was HFA a lot more made sense but nothing really changed. I had already learned to get by (more or less) and would continue to do so. "Different'" and "Autistic" are pretty much the same thing. But the knowledge did help me improve relations within my immediate family quite a bit.

 

[Nervous Rex]

I went thru being that 'different' guy in quite a few ways.

I knew from my early teens that my brain worked very differently from my peers'. For decades, I told myself, "My brain is different from everyone else's...but there so much variety in the brain, that everyone's brain is different from everyone else's." It was one of those, "Keep saying it enough and you might believe it" things.

At the same time, I kept trying to cope and perform the same as everyone else. They get by on little sleep, so I should be able to, too. They juggle multiple projects at the same time, why can't I?

I realized only recently that those two thoughts are contradictory - If I'm different, I shouldn't try to behave and perform the same. Dropping that expectation has been the most freeing thing that my diagnosis gave me.

 

[rollerskate]

First of all, autism is a spectrum of disorders that have been grouped together under the same label. Just because they have the same label doesn't mean they ARE the same, or that they present in the same ways. I think this is what is most confusing about autism for EVERYONE.

Second of all, it really should not matter if you fit under the label of autism or not. EVERYONE has a right to live their life as they choose, and do the things that best support their unique natures. Anyone that has a problem with you doing that, with you fundamentally being different from them... really is not a good person to keep around in your life. This is not a matter of whether or not you're autistic. It's a matter of making choices that support a healthy lifestyle for you. These choices are unique to each individual, as every individual's needs are unique. I know you probably feel like you need the autism label to give you permission to do these things... but nope. You don't. And if you are having issues with that, it might be a good idea to get into some form of self-help or therapy to reinforce that concept in your mind.

There are also no rules here about you not being able to hang out if you're not au, or not being able to relate to any au issues on here. That was the first thing I really appreciated about this forum. When I first joined, all I knew was that my son was au, and I was failing to get him the diagnosis and help he needed because he didn't present in stereotyped manners. I had a slight suspicion I was au, as well, but only slight. However, while discussing him, I realized that I really felt at home in these forums... kept wanting to come back, because communication here was so CLEAR and UNASSUMING. I felt understood in a way here that I hadn't experienced anywhere else before. Over time, I figured out that without a doubt, I'm au, too... but I'm female, and I am well-masked due to heavy home-based ABA while growing up, and I also have a very high IQ which has been used to "hack" a lot of NT stuff. I had to pay attention to how much ENERGY I was investing in just acting NT and translating NT behavior to really start grasping the truth about myself. And I have no diagnosis. I may never get it, though I am trying. I've concluded it really doesn't matter. My physical health started really falling apart in an epic way last year, and that made me realize, autistic or not, I needed to give myself permission to make the needed changes in my life. Because if I waited for doctors to do it, I may have gotten beyond all hope of physical recovery... possibly even wound up dead. I was completely unable to function. And a year later, I'm still having a lot of issues, but I am slowly but gradually improving, and that's much better than what I know would have happened to me if I had not given myself permission to change my life and start learning to pay attention and cater to what my body says.

To you, to ANYONE, I say - don't wait for a diagnosis to give you permission to take the best care of yourself. Don't wait for a diagnosis to give you an excuse to give others that won't allow you to make the space for yourself in your life that you need to be happy and healthy. You know you best. You know what you need best. Better than any doctor, any family member, any friend. And you will always be your best advocate, the only one that is capable of advocating for YOU and YOU alone, without any bias. Side with yourself on this. Seek a diagnosis if you would like a final answer, but don't depend on it for permission or excuses to do what's best for you.

 

[Progster]

I sometimes worry about whether I'm really autistic or not and whether I should really have the diagnosis or not. That my assessment wasn't as thorough as it should have been, because other people being tested had been given a huge battery of tests, over several days or meetings, whereas I had just one consultation. But if I'm not autistic, then how would I explain my childhood difficulties, my social and employment difficulties, problems with rigid behaviour and routine when I was younger, sensory issues - refusing to wear certain clothes as a child, refusing to do and finding things hard as a child, both cognitive and social difficulties. There would be a lot of explaining to do, and autism is simply the best fit.

 

[zurb]

I’m not sure where you’re thinking you might be on the spectrum, but if it’s Aspergers or HFA, you might enjoy a different perspective from Tony Attwood:
The Discovery of “Aspie” Criteria

 

[SimplyWandering]

You are you as others have stated and if you still don’t feel like you measure up.... (our brains are so invested in who we are) I would recommend talking to a therapist/psychologist, whom might be able to help you with some perspective. I wish you the best of luck.

 

[Pinkie B]

Hnn. I don't have access to a therapist. I could, if I wasn't so dysfunctional.

Ha! Case in point?

>_<

 

[JDShredds]

I identify a lot, Pinkie. That experience stuck me back in December, and over the course of the following few months, it took a lot of processing (and obsessing).

I'm in a similar boat. I don't want to define myself by "what I can't do/struggle with," but at the same time need to lead a life that is compatible with my tendencies, strengths, and weaknesses. I'm trying to figure that out as we speak.

When it comes to definitions, diagnosis... it only goes so far. For me, the cost (and stress) involved just isn't worth it just to be labelled "ASD1" or "PDD-NOS" or whatever they'd tag me (certainly would have been Asperger's in the past). To what end? Always trying to convince the government to help me? To "prove" to people I'm on the spectrum? I decided its just not worth it in my circumstances (especially since Autism isn't covered by my current medical insurance, so it would be massively expensive - which I cannot afford).

There's a quote I always loved by the late, great Bill Walsh (American football coach): "Don't show me what you can't do, show me what you can do."

I'm doing my best to live my life accordingly. Don't beat yourself up over it. Everyone struggles in some way, NT's included.

Hnn. I don't have access to a therapist. I could, if I wasn't so dysfunctional.

Ha! Case in point?

>_<

Lol. Story of my life.