On a five year wait list

[Nummulite]

I'm an adult living in Alberta, Canada. Last week I got a referral for an ASD assessment, and I got a call back this morning. She asked me some questions and then put me on the wait list, but she told me that the wait is an estimated 5 years. If I want it sooner I would need to have it done by a private source, which would cost about $2500 (but I'm nearly broke so this isn't an option for me). I knew there might be a long wait, but to me 5 years might as well be never.

I feel crushed. My partner tells me it's okay to self diagnose in the meantime, but I don't feel certain enough about the possibility for that to feel meaningful to me (I don't tick all the boxes, and there are some that I'm just unsure about. When I take online questionnaires the result is almost always "autistic, but barely").

Is anyone else facing a very long wait? Do you have any advice? I don't know what to do now.

 

[ForestGumpett]

Hi;
Why is it important to you for it to be official?

Just curious, I am in the states but do not plan on getting an official test. My aspergers scores on all those test were 100%, but all this did was make my life more understandable.

Is this for work or school?

 

[Nummulite]

Hi;
Why is it important to you for it to be official?

Just curious, I am in the states but do not plan on getting an official test. My aspergers scores on all those test were 100%, but all this did was make my life more understandable.

Is this for work or school?

If I scored higher on the tests and had all of the symptoms then I probably wouldn't mind if it wasn't official, because I could feel reasonably confident that it's true. But right now it seems equally likely to me one way or the other.

Making my life/my self more understandable is my main reason for seeking a diagnosis. I'm tired of wondering what's wrong with me. I can't figure out how other people can live their lives so easily, and I keep trying different things and nothing sticks.

 

[Nummulite]

Friend, this is exactly why I wanted to know and by reading what you wrote - I feel that there is no doubt that you truly are! I wondered the same, why is it so easy for others AND the what’s wrong with me.
Now I know and am okay with who I am and am much easier on myself.

Go ahead and accept it, nothing wrong with that IMHO. My husband thinks it’s great and it’s helped our (already great) relationship in that we both understand me better.

If it makes sense, I’d go with it and not worry. Life is way to short to worry.

Thank you, reading this was really comforting. I don't know if I can accept it for myself right now but I'll keep thinking about things and researching, maybe I'll reach a point where it feels right to me.

 

[Tom]

People self diagnosing only, is very common, particularly among older folks. A formal diagnosis is mostly important when needing to access services. The validity of a self diagnosis is directly proportional to the ammount of research you put into it. Other factors that can help are online self tests, discussing it with knowledgable people you trust and also interfacing with other people on the spectrum (or who think they are) in RL groups or online forums such as this. Something to remember is that there is not actual test for autism like a blood test, etc. With ASD-1 (the least severe symptoms) it comes down to subjective analysis ultimately, and even the professionals get it wrong at times.

 

[Nummulite]

People self diagnosing only, is very common, particularly among older folks. A formal diagnosis is mostly important when needing to access services. The validity of a self diagnosis is directly proportional to the ammount of research you put into it. Other factors that can help are online self tests, discussing it with knowledgable people you trust and also interfacing with other people on the spectrum (or who think they are) in RL groups or online forums such as this. Something to remember is that there is not actual test for autism like a blood test, etc. With ASD-1 (the least severe symptoms) it comes down to subjective analysis ultimately, and even the professionals get it wrong at times.

Thank you, those are all good points. I'll keep doing more information-gathering in the meantime. I've been doing online research, but talking to my family about it (and getting more info about my childhood) would probably be a good step for now

 

[Suzette]

Yes, do talk to your family! They might not really thought anything of your behaviors but those childhood behaviors all add up to patterns.

One thing I realized, in talking to my mom, some if my childhood habits were not recognized in large part because they were not disruptive to her. So you might have to ask follow up questions to get a clear picture.

May I ask what prompts you, or inspires you to seek information abiut autisim? What difficulties have you experienced?

 

[Nummulite]

Yes, do talk to your family! They might not really thought anything of your behaviors but those childhood behaviors all add up to patterns.

One thing I realized, in talking to my mom, some if my childhood habits were not recognized in large part because they were not disruptive to her. So you might have to ask follow up questions to get a clear picture.

May I ask what prompts you, or inspires you to seek information abiut autisim? What difficulties have you experienced?

I've felt like there was a disconnect between myself and others ever since I was a kid. I was diagnosed with social anxiety as a teenager, and I've seen a few therapists about it, but I feel like I'm missing something.

I'm supposed to be smart (my parents checked me for learning disabilities in high school and I scored really high on the intelligence tests) but I have trouble just living my life properly.

I only have two friends (my partner and someone who lives on the other side of the country), and when I try to interact with people I feel like I'm acting and come across very bland and unnatural. I don't know what to say to people in most situations. I have trouble keeping up with day to day things like making myself meals and cleaning my house (even when my mood is fine) and I get sucked into my interests way too hard (eg. for the past 2 months I've been playing neopets for over 8 hours a day, every day, without getting bored). I bite the skin off the inside of my mouth whenever I'm bored or stressed (sometimes way too much).

I ruled out autism for a long time partly because I'm very good at being polite (and I present very differently from my partner, who is on the spectrum), but I read stories recently about people who remind me a lot of myself.

 

[jleeb05]

I'm an adult living in Alberta, Canada. Last week I got a referral for an ASD assessment, and I got a call back this morning. She asked me some questions and then put me on the wait list, but she told me that the wait is an estimated 5 years. If I want it sooner I would need to have it done by a private source, which would cost about $2500 (but I'm nearly broke so this isn't an option for me). I knew there might be a long wait, but to me 5 years might as well be never.

I feel crushed. My partner tells me it's okay to self diagnose in the meantime, but I don't feel certain enough about the possibility for that to feel meaningful to me (I don't tick all the boxes, and there are some that I'm just unsure about. When I take online questionnaires the result is almost always "autistic, but barely").

Is anyone else facing a very long wait? Do you have any advice? I don't know what to do now.

Yes! I just had the first day of my assessment but I went through a private source and it cost $2100 here in the USA. I'm also still scheduled to get an assessment done through my insurance but the shortest wait list is 8 months and many of them are longer. It's very disheartening.

I will post more about my experience today but like you, I don't neatly fit into many of the ASD boxes so I find it hard to self-diagnose. It was important to get the clinician's perspective for this reason and because I wanted to make sense of my experiences. That said, I feel that the people I've spoken to on here (and now with the clinician) have really affirmed my initial suspicions. I went from being 50/50 to be very certain and the clinician seemed to affirm that.

Talking to my family and members on this forum has been really helpful. It might not be as satisfying as the certainty of a clinician's diagnosis but in the interim, it really helped me make up my own mind. At this point, I feel the clinician will only be telling me what I already know to be true.

 

[Yeshuasdaughter]

I think that sounds very normal, especially for government services. I'm in the USA, and I've had to deal with wait lists for housing and other supports.

I'd say get on the wait list, and just learn about autism on your own until then. And try not to forget that you're on the wait list. Don't move, change phone numbers, or email addresses without telling them.

 

[Suzette]

@Nummulite
There are a few Youtube channels that might be helpful. Yo Samdy Sam, The Aspie World, Aspergers from the Inside, and just about any Temple Grandin interviews.
These three channels are particularly relateable and do give good information for aspies. Temple Grandin is, of course, an amazing teacher and authority on autisim and is, as you probably know, autistic herself.
I think these 4 perspectives are a great resource for people who are not clinically minded and need to see "autisim in action" so to speak.

One of the most salient points these perspectives make is the autisim is indeed a spectrum. We are all different from one another and people will not, usually, have every trait. So don't discount autisim because you do somethings relatively well.

Also, be cautious when watching Youtube videos. It seems "I am an aspie" is becoming just as popular as saying "my narcississt". There are plenty of people out there intent in making a buck off the spectacle of autisim.

 

[LadyS]

For me, needing a diagnosis was less for myself and more for convincing others close to me. Once I did, it was easier to talk to people like my parents about my past and how things could have been done differently and the reasons for my present emotions. Have doctors in the family too that helped convince them. I hope you are able to find a solution.

 

[Streetwise]

Please tell me you said youd be available for a cancellation

 

[Nummulite]

Please tell me you said youd be available for a cancellation

As in if someone higher on the list cancels, I'd take their spot? I didnt think to say that, I thought they would do that automatically with the next person on the list- if that's not the case maybe I will call them back and mention it

 

[VictorR]

You're a bit lucky being in AB that they cover adult diagnosis (though with a long wait list) - some provinces like BC don't cover it, so the only option is private (and even then, 6m - 2 year wait time is typical, and usual cost is around $2000-$2500).

What you might want to do in the meantime is do some readings on the topic, including stories/narratives, and on how to cope, whether in personal life or work life. I'm sure lots of the stuff might be helpful whether you're on the spectrum or not. The other thing is to keep in mind that the diagnosis isn't an exact science, and diagnosing an adult or someone with intersectionalities can be more challenging due to different presentation, or improved masking or learned skills.

 

[Streetwise]

As in if someone higher on the list cancels, I'd take their spot? I didnt think to say that, I thought they would do that automatically with the next person on the list- if that's not the case maybe I will call them back and mention it

it probably won't happen but you never know

 

[Streetwise]

I've heard on this forum some not!many!people were diagnosed for free at I imagine the psychiatry\psychology department of universities as they are training future members of those professions.

 

[Nervous Rex]

Making my life/my self more understandable is my main reason for seeking a diagnosis. I'm tired of wondering what's wrong with me. I can't figure out how other people can live their lives so easily, and I keep trying different things and nothing sticks.

I totally understand you wanting an official diagnosis. For me, an official diagnosis was a form of closure or validation - knowing that it's not just in my head.

The 5 year wait sucks, but in the meantime, I encourage you to start surfing this forum. There are discussions about coping mechanisms and techniques for almost every topic you can imagine. And if you can't find a topic, start a thread. I think one of the best things we can do on this forum is share what works for us, and encourage one another.