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bee33
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16 Jun 2020, 4:43 pm

Is it worth trying to get a diagnosis? I don't need services or disability payments, so there isn't a practical reason.

What I would like is to be able to find a way to learn to be better at interacting socially and to be able to make friends. But I'm not sure that this is a service that would even be available, even if I had a diagnosis, or that it would work, because I'm not sure it's possible to learn to read social cues.

I'm thinking I could talk to a like-minded therapist, which would be a relief: to be understood. Or that it would somehow make it more likely or possible to meet other people who understand what it's like, but I don't know if that is realistic.

I also would like to be able to explain when neurotypical people don't understand my behavior that I am autistic (assuming that I am) and that I'm not trying to be rude to them. But, again, I don't know if that would work either, since people don't really understand how autism can make a person seem odd or rude.



ASPartOfMe
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16 Jun 2020, 7:01 pm

Some people need professional validation for their suspicions.

A professional diagnosis makes it more likely that people will believe you or give you leeway about being unintentionally rude but it is far from a guarantee.

Things are significantly better for middle age women trying to get a diagnosis than when you had your horrific experience 11 years ago but there are still problems with lack of understanding of how autism presents in mature women.

Less expensive options for getting a professional diagnosis include.
1. Being part of a study.
2 Getting diagnosed by an extern
3. Getting an "unofficial diagnosis" which means having a professional say you are autistic but no diagnostic report is written saving them hours of labor and hopefully you money. This option can give you the peace of mind of validation.

Obviously with the pandemic now is not an opportune time to seek a diagnosis. In the last 11 years there have been a whole bunch of books written for autistic women as well as blogs, websites.. There are youtube videos about social skills, body language etc.

Autistic Women & Nonbinary Network.

Undiagnosed people, people suspecting they are autistic are readily accepted in most of these networks.

Good luck


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17 Jun 2020, 12:07 am

You may find that a diagnosis ends up being more useful than you realize right now. When I was first diagnosed, it was to get self-acceptance and accommodations at school, but I had no idea how much else was out there. I now have a job coach, an occupational therapist, a regular therapist, an art therapist, two social workers, a speech therapist, and in-home services to help with cooking and cleaning, as well as a day program that enables me to get out of the house for recreational activities. I had no idea I could get all that when I got my diagnosis six years ago.

You don't necessarily need a diagnosis to get a therapist, but having one will enable them to help you better, as they can tailor their approach to your autism.

Personally I'm of the belief that you really should get a diagnosis if you have the means to; self-diagnosis really only makes a good stepping stone, not an end result.


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bee33
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17 Jun 2020, 3:05 am

Thank you for your responses.

Another concern that I have is that dealing with doctors and therapists has always been fraught, and in my experience has been worse than just staying away. (I'm still upset from the last time I tried 11 years ago.) So I'm worried I could be opening up a stressful can of worms.

The person I was thinking of contacting for an assessment is Sarah Hendrickx. She is in the UK (I am in the US) but she does assessments via Skype. It's pretty expensive but I can afford it.

This is a video of one of her lectures: https://www.youtube.com/watch?v=yKzWbDPisNk



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17 Jun 2020, 7:56 pm

My main reason for having sought a diagnosis (and to be clear, I still don't have an official one) sounds pretty similar to yours. For the most part, I'm pretty functional (though it's not always easy, and just like you, social interaction is my biggest struggle). I just wanted to be able to tell people that I have an official diagnosis for being the way I am and that it's not just something I'm making up. I also had some encouragement from some friends who were concerned that my autism would lead to me being unable to work and that I would need to be on disability. In fact, if it hadn't been for those friends, there is a good chance I would never have sought a diagnosis at all.

I think the question of whether it is worth it to seek a diagnosis when you don't necessarily need accommodations or benefits is individual. It can definitely cost a lot of money if you don't have health insurance.

I think you have a good point that neurotypical typical folks don't always have a good understanding of autism, especially high-functioning autism. I think most people in the general public still associate the term "autism" with what used to be considered autism when Asperger's was still a separate diagnosis. Still, more and more people are getting educated on exactly what autism is and how it impacts life every day! :)

I also have difficulties with doctors and therapists, though I'm not sure if it's for the same reason as you. But no matter what your reasons are, just know that not all doctors and therapists are equal. Some are better than others. I always recommend looking for the good ones. :)

Wow... that's pretty cool that you can get an assessment over Skype now! How much does it cost, I wonder? And I also wonder, would a diagnosis from a professional in another country count as an official diagnosis for legal purposes in the US?



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18 Jun 2020, 3:43 am

I guess it all depends on what you want the diagnosis for tbh

I went for it almost 4 years ago at the age of 37 and was diagnosed with Aspergers. I have not told my family and only my wife and my employer (but not colleagues) are aware. I did it because I was going through yet another difficult time and I always beat myself up about things. I wanted to learn more about myself and understand why I struggle in certain areas. Having got the diagnosis I definitely take it easier on myself and what I have found is that I have kind of relaxed into who I am more, so there has absolutely been a positive for me on this.

I can't help but wonder that doing it for others to understand you better and realise why you are the way you are may just lead to disappointment. If someone isn't welcoming you warmly then I am not sure suddenly being told you have a neurological condition is going to change that situation around. Could be wrong though.



lostproperty
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18 Jun 2020, 7:19 am

Biscuitman wrote:
Having got the diagnosis I definitely take it easier on myself and what I have found is that I have kind of relaxed into who I am more, so there has absolutely been a positive for me on this.


Wish I could say the same, but after a post diagnosis short-term feeling of "How else could I have turned out?", I've slipped back into an endless cycle of regrets and wishing I'd done or handled things differently.

I haven't gone back out into the world since my diagnosis, maybe I'd find people more understanding, easier to deal with and life generally easier to navigate if I did. I don't feel inclined to give it a go though, quite the opposite.



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18 Jun 2020, 8:07 am

lostproperty wrote:
Biscuitman wrote:
Having got the diagnosis I definitely take it easier on myself and what I have found is that I have kind of relaxed into who I am more, so there has absolutely been a positive for me on this.


Wish I could say the same, but after a post diagnosis short-term feeling of "How else could I have turned out?", I've slipped back into an endless cycle of regrets and wishing I'd done or handled things differently


I have definitely had moments like that. I look back at the last 20 years and wonder what I could have done and achieved if I had applied myself in the right way and put myself in the right situation, instead of trying to follow the 'standard' plan for life and then struggling with it. Though saying that I can't complain as I am fortunate enough to have always been employed, work for a good company and have a job that means I don't struggle hand to mouth.

I have also become a little bit bitter about my secondary school experience now I have the diagnosis, which is silly because that was 25 years ago and being bitter helps no one.



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18 Jun 2020, 10:54 am

I'm your age and just talked to a psychologist about a diagnosis. She validated that I have autism and recommended against going through the process of a medical diagnosis. In her opinion, it would only be worthwhile if I needed it to qualify for disability. Since I've always been employed and am not in danger of losing my employment, she thought it would be a huge headache for nothing. I think the testing process would be emotionally painful. I still feel out of sorts after just talking to a psychologist three times. It's very stressful for me.

I would love to hear about your experiences if you talk to Sarah Hendrickx! I've watched her videos and was curious about being evaluated by her, too. I didn't know she did Skype evaluations.



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18 Jun 2020, 11:37 am

Yes, I agree that the process of getting a diagnosis would be a lot of stress for someone on the spectrum.
A lot of places don't have much in the way of benefits for adults.



bee33
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19 Jun 2020, 2:36 am

Thank you for all your responses.

The information on how to receive an assessment by Sarah Hendrickx is here: http://www.asperger-training.com/autism ... ssessment/

It's fairly expensive, and although I can afford it, that is a concern as well, in part because in the past it's been for me a source of resentment and anger toward therapists, psychologists, and psychiatrists who really didn't help and in some cases were upsetting for being so exceptionally unhelpful, because having paid them so much adds injury to insult. Sarah seems great in her lectures but who knows.

Though not recently, I have seen several therapists over the years, and it has always been rather awful. And if I brought up autism they knew nothing about it and weren't interested in discussing it, so it's not that I require a medical diagnosis but I don't know who else to ask besides someone who specializes in diagnosing autism.

I actually went for a diagnosis with an autism specialist about 10 years ago and got nowhere. She didn't give me a diagnosis, neither a yes nor a no, so it was completely useless.

I'm a bit frustrated. :)



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19 Jun 2020, 10:37 am

You never know when a diagnosis might be useful. I wasn't really expecting to use mine much for any practical purpose, but there is suddenly a requirement for staff in my industry to wear face coverings for much of the time at work. Thanks to having a formal diagnosis I have been able to obtain an exemption that allows me to remove my face covering when I feel I need to. I really can't cope with wearing something over my mouth and nose for more than a few minutes. Without having my formal diagnosis I think I would have been in real trouble.


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20 Jun 2020, 2:58 pm

bee33 wrote:
Thank you for all your responses.

The information on how to receive an assessment by Sarah Hendrickx is here: http://www.asperger-training.com/autism ... ssessment/

It's fairly expensive, and although I can afford it, that is a concern as well, in part because in the past it's been for me a source of resentment and anger toward therapists, psychologists, and psychiatrists who really didn't help and in some cases were upsetting for being so exceptionally unhelpful, because having paid them so much adds injury to insult. Sarah seems great in her lectures but who knows.

Though not recently, I have seen several therapists over the years, and it has always been rather awful. And if I brought up autism they knew nothing about it and weren't interested in discussing it, so it's not that I require a medical diagnosis but I don't know who else to ask besides someone who specializes in diagnosing autism.

I actually went for a diagnosis with an autism specialist about 10 years ago and got nowhere. She didn't give me a diagnosis, neither a yes nor a no, so it was completely useless.

I'm a bit frustrated. :)


Sarah assessed me. I found it a useful experience. I think I was right to go down the non clinical route - it gave the confirmation that my profile meets many criteria and I have an objective view to go alongside my subjective information from the inside.



bee33
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20 Jun 2020, 11:09 pm

rowan_nichol wrote:
Sarah assessed me. I found it a useful experience. I think I was right to go down the non clinical route - it gave the confirmation that my profile meets many criteria and I have an objective view to go alongside my subjective information from the inside.

Thank you. I'm definitely considering it.



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22 Jun 2020, 11:38 am

I am going to get an online assessment done by a Canadian specialist, Natalie Engelbrecht, when I have the chance to do so. I live in the US, and I believe her diagnoses are accepted by the court systems and probably accepted by most other systems in the US as well. I'm sick of flipping back and forth on whether or not I have autism. Having a diagnosis in my back pocket could end up being useful. For example, at the start of the pandemic I really wish I could have told my supervisors that I have autism and may need some more time to change around my teaching curriculum. If you have the money, I would do it. It can only help by giving you more power to know and ask for help/predict when problems might occur.



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23 Jun 2020, 5:50 am

I relate to a lot of what this young women discusses about her adult diagnosis.
Aoife Dooley: Why we all need to talk about adult autism

Quote:
AOIFE Dooley has more than one string to her bow: She is an illustrator, a comedian, and an author.

Roddy Doyle once reached out to her to compliment her work and said it reminded him of why he loves Dublin. Remembering that moment, she says: “I nearly fell down the stairs running down to tell my nana.”

She is also an outspoken advocate for autism awareness. Aoife, who is from Coolock, was diagnosed with autism at the age of 27 and she says it gave her a greater understanding of herself. “It was surreal, if I’m being honest, and I’ve learned a lot about myself and others,” Aoife says.

“I spent my whole life trying to fit in to please others when I knew deep down that I was different but couldn’t articulate why I was different. I got to the stage where I would rather draw in my room than spend time with people my age because it wasn’t just about me feeling a bit different but how others made me feel about myself because I was different.

“It’s like you’re constantly looking for an answer you don’t know the question to.”Aoife says she didn’t realise the extent of the autism spectrum until her own diagnosis. “When you get a diagnosis as an adult it’s bizarre because everything and nothing changes at the same time. You’re still you, but now you have the tools to understand who you are and how you work. A lot of people don’t understand what autism is or how vast the spectrum actually is and I was definitely one of those people; I hadn’t a clue.”

Tara Matthews, deputy executive director of the Irish Society for Autism, said the organisation is seeing more adults seeing advice about autism.

“In recent years we have experienced an increasing number of calls concerning adults who suspect that they may be on the autism spectrum,” she says. “A person may wonder if they are autistic; they may have seen or read something which describes their own experiences. It is not unusual for some people to have gone through life without a formal autism diagnosis. However, for those seeking a diagnosis we would encourage them to contact their GP to discuss this further and their GP should be able to advise.”

Speech and language therapist Dr Caroline Winstanley, who confirmed Aoife’s ASD1, which was once referred to as ‘high-functioning’ Asperger Syndrome, says she is seeing an increase in the number of adults seeking assessments for autism. Many, she says, realise they may be on the autism spectrum after attending an assessment for their child. “In the last two years, I have seen an increase in older teenagers and adults seeking private ASD assessments,” she says.

“A lot of the adults that I have assessed have been attending adult mental health services due to depression and anxiety, and through intervention, it had become apparent that the root cause of their difficulties may be autism.

“There have also been cases where some of the adults I have assessed have gone through an autism assessment with their child/children and then realised that they would have many similarities.”

Dr Winstanley believes more people are aware of the symptoms of autism through media reports.

“ASD is also more talked about in the media in general and some people I see would have read about autism and have self-identified,” she says.

Aoife too is trying to increase awareness of autism in adulthood.

She revealed her diagnosis publicly in a way that felt natural to her — through her illustrations on Instagram and @Aoife_Dooley on Twitter. “I use my illustrations to spread awareness about different issues, for example, the anti-vaccine debate which, unfortunately, people still believe,” Aoife says.

“It’s been discredited time and time again, proving no evidence that the MMR causes autism, and the doctor who initially started it all, Andrew Wakefield, has been discredited.

People fear autism because they don’t understand what it is. People don’t realise that without autistic minds we would not have the technology, music, art, amongst other amazing things, that we have today.”

Aoife says people are happy to engage with her online about autism and learn about it. “The reaction to what I speak about is usually grand; people are interested in the topic.

“I don’t talk down to anyone either because there was a time when I didn’t know what autism was and I respect that some parents who are on the fence are just scared, but it’s important to weigh up the facts.

“I get the odd ‘anti-vaxxer’ or troll every now and then but that’s nothing a swift block doesn’t sort out.

“I actually think it’s funny when people use my autism to attack me like it’s something to be ashamed of when in fact it’s one of the reasons I’ve been so successful in what I do. I wouldn’t ever want to change that part of me, because it is me.”

Aoife says she knew when she was diagnosed that there must be others like her struggling without a diagnosis. “I thought it was important to talk about it because I was absolutely numb when I found out,” she says. “I was happy but I was really angry too because I had struggled for such a long time with no help. I thought to myself on the day I received my diagnosis, ‘how many other people are there out there, people like me, but they don’t know?’

“I’ve had nothing but positivity since I’ve started talking about autism on my platforms and it’s helped a lot of people. Some have been assessed and found out that they’re autistic too. Autism is different in women so some traits are harder to spot than others and we learn how to blend in and be like other people so it can be missed and go under the radar. This is one of the reasons why women are diagnosed late.”

Autism manifests differently in each individual, and Dr Winstanley says there are signs that can indicate it. “Autism, regardless of when diagnosed, is a spectrum and each person that I meet can present very differently from the next,” says Dr Winstanley. “Adults with autism can report difficulties in making friends and maintaining social relationships; managing the social components of their day job. They may experience difficulties in understanding their emotions and the emotions of others. They may have difficulties using non-verbal communication, such as gestures and eye-contact and then linking these with their verbal communication. They may have difficulties with small talk and conversation and may appear to have no filter and can make inappropriate comments. They may have intense interests that become all-consuming and make it difficult for them to engage in other activities,” she says.

“Some of the adults I would meet would have already developed many coping strategies for managing more challenging situations and can mask some of their difficulties.”

Aoife says her diagnosis means she understands herself better and, as a result, she is much kinder to herself.

“I am so much nicer to myself and don’t beat myself up over things that I know I’ve absolutely no control over. I think it’s also allowed my boyfriend and family to understand me better, which is great because I have a much stronger relationship with them now. It kind of feels like a weight has been lifted and I can just be me and live my life now knowing my own limits. I feel a lot more confident in myself.”

Dr Winstanley believes a diagnosis can ease a patient’s anxious feelings and allow loved ones to support them better. “Just receiving a diagnosis can be a great source of relief and a useful framework for understanding their early life experiences and also helping partners, wives, husbands, family members, employers, and friends understand and support them better,” she says.

Aoife tries to help others who reach out to her but says she can only speak about her own experience.

“A lot of people assume that autism is the same for everyone when in fact we are completely individual,” she says. “I wish I did have all the answers but I’m still only beginning to understand it for myself. I feel like I’m only on chapter two of a book with 200 chapters.”


The part I relate to most is being clueless about the extent of Autism. She also taught me a lesson. I do get frustrated and angry with the ignorance about Autism out there so it was a necessary reminder that I was one of those people.

Like many here the parts where she discusses how everything changed and nothing changed I am still me, and being kinder to oneself because of understanding mirrors my post diagnosis feelings and thoughts.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman