Please help me understand my autism diagnosis from Embrace Autism

[RosebyAnyName]

I recently got a diagnosis for autism from Embrace Autism. Now that I have that diagnosis, I've been able to recontextualize my experiences and it's been helping me recover. I am especially grateful that they allowed me to keep the report, and respected my request to keep it off my health record (I did not want to pursue government support, and did not want to be banned from Europe).

However, now I'm hearing, allegedly, that Embrace Autism is a diagnosis mill, which is making me again question if I have autism. I specifically pursued this to finally put that doubt to rest, but now I feel like I'm back at square one if this place really is just going to hand out diagnoses anyways (allegedly). Even worse, if the allegations are true, then I'll feel like I'm too dumb to try and pursue a diagnosis again, since given my luck I'd probably just accidentally stumble across another diagnosis mill. It's not like I knew any better the first time.

Speaking with a psychiatrist is fairly expensive and inaccessible where I am. I've tried a couple times, but gave up every time because it was too complicated, way too expensive up-front, or the instructions were unclear (leaving a message on a phone line and getting no response, sending emails and getting no response, or psychs that only diagnose children and refuse adults).

Does anyone else feel the same way or have something similar happen to them? I really want to avoid purely self-diagnosing because self-diagnosed people get hated on so much, yet I want to avoid pursuing a second opinion if possible because the process was honestly pretty excruciating the first time.

 

[Dot]

Now that I have that diagnosis, I've been able to recontextualize my experiences and it's been helping me recover.

Wll b intrstd 2 C wht othr ppl sy hwevr ths prt = prbbly th/ mst imprtnt imo

If u hve bn givn info whch hs bn helpng u recvr thn persnlly thnk tht = gd thng

 

[Alexei_Kirillov]

I'm with Dot; I think you should focus on what you're getting out of this information and whether it's been--and will be--helpful to you.

Now, with that said--and this is purely my own (relatively uninformed) opinion, so take it with a grain of salt--I do think we should be careful with diagnoses, whether professional or not, as they tend to pigeonhole people into a box and limit their conception of what's possible. Just because an explanation is satisfying does not mean it's correct. It might be useful to ask yourself: is there a better explanation for what I have experienced in life? It's possible that after this process you come to the conclusion that the diagnosis is indeed worth having, in which case I don't see anything wrong with self-diagnosis, but it's something to keep in mind.

This article is well-worth reading during your deliberations. As the author says: "you should remember that the diagnosis that thrills you today with its comprehensibility and social force will choke you tomorrow with its reductive limitations."

 

[Lookingtoflyfree]

I recently got a diagnosis for autism from Embrace Autism. Now that I have that diagnosis, I've been able to recontextualize my experiences and it's been helping me recover. I am especially grateful that they allowed me to keep the report, and respected my request to keep it off my health record (I did not want to pursue government support, and did not want to be banned from Europe).

Speaking with a psychiatrist is fairly expensive and inaccessible where I am. I've tried a couple times, but gave up every time because it was too complicated, way too expensive up-front, or the instructions were unclear (leaving a message on a phone line and getting no response, sending emails and getting no response, or psychs that only diagnose children and refuse adults).

Does anyone else feel the same way or have something similar happen to them? I really want to avoid purely self-diagnosing because self-diagnosed people get hated on so much, yet I want to avoid pursuing a second opinion if possible because the process was honestly pretty excruciating the first time.

I've heard it about Embrace Autism - it's not that they are a diagnosis mill, but I did read something about their enthuaism that made me step away from getting the diagnosis from them. I ended up getting a formal diagnosis from a clinic to help me figure out about support. You can also be fine with self-diagnosis and never tell anyone. I did the self-diagnosis process but felt it didn't help me understand my condition, and getting the process done (in the report) helped me see my challenges more clearly. I don't know which places report if we have a diagnosis or not but understand how that's a concern.

Sending you hugs - this world is not easy for us <3

 

[Davey40210]

Yeah, I feel like you can't really trust institutions.. I haven't gotten a formal diagnosis because I don't really know where to do with it. I'm also not sure if it would change anything, although I understand your point OP it may be nice to get clarity.

So I just keep in mind I may have it and rather focus on my tendencies and personality traits to do certain things rather than assume I have every trait.

 

[Alexei_Kirillov]

@derpyderpins might have a useful word or two on this topic as well

 

[RosebyAnyName]

I'm with Dot; I think you should focus on what you're getting out of this information and whether it's been--and will be--helpful to you.

Now, with that said--and this is purely my own (relatively uninformed) opinion, so take it with a grain of salt--I do think we should be careful with diagnoses, whether professional or not, as they tend to pigeonhole people into a box and limit their conception of what's possible. Just because an explanation is satisfying does not mean it's correct. It might be useful to ask yourself: is there a better explanation for what I have experienced in life? It's possible that after this process you come to the conclusion that the diagnosis is indeed worth having, in which case I don't see anything wrong with self-diagnosis, but it's something to keep in mind.

This article is well-worth reading during your deliberations. As the author says: "you should remember that the diagnosis that thrills you today with its comprehensibility and social force will choke you tomorrow with its reductive limitations."

The things that frustrates me is that people have accused me or even asked me outright if I was autistic all throughout my life, except currently where I've since isolated myself from everyone because I'm sick of dealing with other people. If I've had that handful of people ask me about it to my face in contexts where it wasn't appropriate to bring up (so not in the setting of a formal diagnosis or other interview), then clearly I'm very visibly something to almost everyone, and the majority of people read it as autism. I never got to decide if I was or wasn't autistic before other people decided for me, I tried to pursue a diagnosis to see if they were right.

I don't want to be autistic, even if it's not autism I just want to be normal and have people stop asking me.

 

[Alexei_Kirillov]

The things that frustrates me is that people have accused me or even asked me outright if I was autistic all throughout my life, except currently where I've since isolated myself from everyone because I'm sick of dealing with other people. If I've had that handful of people ask me about it to my face in contexts where it wasn't appropriate to bring up (so not in the setting of a formal diagnosis or other interview), then clearly I'm very visibly something to almost everyone, and the majority of people read it as autism. I never got to decide if I was or wasn't autistic before other people decided for me, I tried to pursue a diagnosis to see if they were right.

I don't want to be autistic, even if it's not autism I just want to be normal and have people stop asking me.

I hear you, I've gotten that assumption thrown at me by mental health professionals, laypeople, and autistic people themselves. Usually I just say, "Maybe I am, I don't know and I don't care." The way I see it, it's not my problem if their conception of normal human behaviour is too limited to include my behaviour. Shrug.

 

[derpyderpins]

@derpyderpins might have a useful word or two on this topic as well

Well idk about useful but I'll give my 2c.

So I want to get a formal test for autism and that place is one I've considered. My shrink says based on all my screening results I'm probably positive, but I need a specialist, and for her purposes she's treating my symptoms, so whether it's autism, ADHD, OCD, or a combination, if the meds are working we aren't going to change.

I really want the diagnosis for what you've talked about here. It explains A LOT about me and my life. I've obviously become very good at masking it, but the symptoms and behaviors are all there behind the surface.

Whether the diagnosis is "right" or not ultimately isn't what matters. I always say if I get a diagnosis that doesn't change my brain. Right now I'm either "autistic" or I'm not, but either way I know from researching and learning about autism that I have overlapping behavior. So, the types of treatments and methods autistic people use can be helpful to me either way.

I understand the apprehension about the validity of the diagnosis. I feel like even with a diagnosis some people will think I'm just being silly and LARPing. I'm high functioning after all, couldn't possibly have autism. (In their minds.) But, really, the diagnosis doesn't matter. It's one more tool to help you understand yourself and your mind. No one fits perfectly into any box.

 

[alltoomuch2]

Well idk about useful but I'll give my 2c.

So I want to get a formal test for autism and that place is one I've considered. My shrink says based on all my screening results I'm probably positive, but I need a specialist, and for her purposes she's treating my symptoms, so whether it's autism, ADHD, OCD, or a combination, if the meds are working we aren't going to change.

I really want the diagnosis for what you've talked about here. It explains A LOT about me and my life. I've obviously become very good at masking it, but the symptoms and behaviors are all there behind the surface.

Whether the diagnosis is "right" or not ultimately isn't what matters. I always say if I get a diagnosis that doesn't change my brain. Right now I'm either "autistic" or I'm not, but either way I know from researching and learning about autism that I have overlapping behavior. So, the types of treatments and methods autistic people use can be helpful to me either way.

I understand the apprehension about the validity of the diagnosis. I feel like even with a diagnosis some people will think I'm just being silly and LARPing. I'm high functioning after all, couldn't possibly have autism. (In their minds.) But, really, the diagnosis doesn't matter. It's one more tool to help you understand yourself and your mind. No one fits perfectly into any box.

I've had a formal diagnosis from a specialist clinical psychologist in the NHS so should be right. I was very doubtful I was autistic before the diagnosis. But the formal diagnosis has helped me in so many ways. An autism team liase with my mental health team and advise them where necessary. I have access to a specialist autism trained crisis team. It has helped my mental health team to start to tease out what is fixed and what is likely caused by my mental health problems. It has given me access to post-diagnostic support. I can ask employers to make what are called "reasonable adjustments" so that I'm not disadvantaged compared to colleagues at work. It has helped me to forgive myself for the things I'm not good at or can't do. I understand about the diagnostic assessment. It is incredibly arduous but if at the end of it you have all the above benefits, maybe it's worth it so you can put to bed this seeming imposter syndrome. Just my experience though and I don't know where you start to find a generally acknowledged legit centre for assessment. But if this doubt is going to torture you, and if you're not comfortable with self-diagnosis, I'd say do go for a second opinion, even though it's very hard.

 

[derpyderpins]

I've had a formal diagnosis from a specialist clinical psychologist in the NHS so should be right. I was very doubtful I was autistic before the diagnosis. But the formal diagnosis has helped me in so many ways. An autism team liase with my mental health team and advise them where necessary. I have access to a specialist autism trained crisis team. It has helped my mental health team to start to tease out what is fixed and what is likely caused by my mental health problems. It has given me access to post-diagnostic support. I can ask employers to make what are called "reasonable adjustments" so that I'm not disadvantaged compared to colleagues at work. It has helped me to forgive myself for the things I'm not good at or can't do. I understand about the diagnostic assessment. It is incredibly arduous but if at the end of it you have all the above benefits, maybe it's worth it so you can put to bed this seeming imposter syndrome. Just my experience though and I don't know where you start to find a generally acknowledged legit centre for assessment. But if this doubt is going to torture you, and if you're not comfortable with self-diagnosis, I'd say do go for a second opinion, even though it's very hard.

Thank you. That message is very encouraging. I will keep working on a formal diagnosis.

Forgiving myself for what I'm bad at is a big motivational factor.

 

[alltoomuch2]

Thank you. That message is very encouraging. I will keep working on a formal diagnosis.

Forgiving myself for what I'm bad at is a big motivational factor.

The years of blame for things that you didn't know you couldn't help, and the not realising how to make your life easier takes such a toll. Good luck and hope it goes well for you :-) x

 

[Amarajoy]

Where did you hear autistics are banned from Europe?

 

[RosebyAnyName]

Where did you hear autistics are banned from Europe?

I'm probably misremembering the specifics, all I know is that some places consider autism diagnoses when considering immigrant applications, and that it can sometimes negatively affect your prospects to immigrate.