Autism diagnosis as an adult

[Ennui.]

My BPD diagnosis was taken away and I was diagnosed with autism today and was looking for more information and experiences. I’m also wondering what I should do with myself from here on out and tricks to help myself more. I know a label shouldn’t change anything that’s already happening but I never had supports in place growing up so I’m just wondering where to go from here.

[Rika]

I've been through it all as a kid and teenager. I don't technically think the doctors etc knew exactly what I had, so autism was what I believe doctors went with. I was a minor at the time, and do not recall very much back in those days. This was back during the 90s and early 00s, though. Family who work in daycare or similar stated it's way more like common these days to know right away if a child or person has autism. I've felt like I accepted that answer even if I was a minor who was unable to advocate or speak up for myself back then.

As an adult getting a dx I do not know, but Google-fu said:

A qualified healthcare professional, like a psychologist or psychiatrist, can diagnose autism in adults. Adults who aren't diagnosed in childhood may benefit from a diagnosis later in life. However, many adults learn to live with their symptoms, which can make diagnosis difficult. One reason an adult ASD diagnosis can be tricky is that you've probably become very good at managing.

[Arabesque- golfing girl.]

Hello Dez,

I am so sorry about this and I hope that you will be okay soon. I Googled autism and I was able to find different articles on this to help you to feel better soon and they are, https://www.verywellhealth.com/why-h...lenging-259951, https://www.autism.org.uk/advice-and.../all-audiences, https://www.verywellmind.com/autism-...g-well-5203938, https://www.nhs.uk/conditions/autism/newly-diagnosed/, when you have time if you would like to look at them. Also I found this online group too, if you want to look at that when you have time. It is, http://www.myspectrumsuite.com/autis...munity-groups/ I hope you will be okay soon.

[Proud90sKid]

Learning you have autism spectrum disorder can be a very paradigm shifting experience, at least it was for me.

There is no medication to treat the core symptoms of autism. Some people take Risperdal or Abilify which are FDA approved for "irritability or self-harm associated with autism" but I have never had nor wanted to do that. In college in 2012, my ADHD diagnosis was taken away and I was given a diagnosis of Asperger's syndrome (a term that is no longer used for diagnosis, but I haven't been diagnosed under the new system that went into place(in the US) a year later in 2013). What problems are you having? They would need to be treated on a symptom-by-symptom basis. There isn't really a global treatment for it. It is just a different neurology. My most problematic symptoms are lack of social tact and significant OCD/anxiety. I use masking for the first when it would be beneficial for me but haven't figured out the second yet. My anxiety has always been pretty bad. I am on some klonopin, but long term treatment with benzodiazepines is controversial. I used to drink a lot to address the anxiety and to reduce overstimulation but then I had repeated attacks of alcoholic pancreatitis and can no longer safely drink. I feel like the effects of a bit of alcohol made it easier to mask. Masking is basically figuring out how people work and then deciding if you want to imitate that group in a specific situation or not. What do you mean by supports in place growing up? You probably didn't need extensive supports because you only have level 1 ASD (basically Asperger's), which often isn't associated with developmental delays. It sounds like you worked on issues with a psychologist and that counts as a mild support. It is the people with level 2 or level 3 who experience significant developmental delays and generally require the type of help culturally associated with autism diagnosis. Some people don't like levels, but they absolutely are useful for classifying people by the type of support that they will benefit from. Level 1 is a different life than a level 2, which is a different sort of life than level 3. Here is the DSM V definition of autism and the breakdown of the different levels: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

You said you were diagnosed with BPD. Do you experience episodes of intense frustration/aka "meltdowns"? Those are a symptom of autism. Sometimes self harm is involved in these meltdowns or overloads. Being female+having those specific autism symptoms could have resulted in a misdiagnosis of BPD. I would bet money that your gender had a lot to do with you being misdiagnosed as BPD.

The old system used to refer to ASDs as Pervasive Developmental Disorders (PDDs) and there were 5:
Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder (autism with apparent severe regression), Rett Syndrome (no longer part of ASD....determined to be a very rare genetic condition affecting females), and a catch-all-others term called PDD-NOS (PDD-Not otherwise specified). All are now diagnosed as ASD except for Rett Syndrome. And autism is now "Autism Spectrum Disorder" and not "Autistic Disorder". Autistic disorder in the old system was more specific and was defined by a particular set of symptoms that you don't seem to have. You would more likely be considered Asperger's in the old system. The problem with the old system is that it didn't seem to line up with reality. Some people diagnosed with autistic disorder (supposed to be more severe) as a result of a speech delay could grow out of their speech problems and into an Asperger's presentation. Temple Grandin is an example: she had severe speech issues as a child but then outgrew them and essentially is indistinguishable from someone with Asperger's as an adult. And the catch-all PDD-NOS term was actually the most common diagnosis because you had many people who had enough delays to not be diagnosable as Asperger's but not the particular ones that are required for autistic disorder. In addition, it was never conclusively proven that some people with autism truly develop it quickly years after birth or if their symptoms just become obvious to parents who strongly believed initially that they had a typical child- so childhood disintegrative disorder had to be reconsidered as well. Today it would probably be called autism spectrum disorder with possible features of regression, or similar. The system just didn't work as well as intended.


And honestly I am going to just say it: there are forums much better and bigger than teenhelp for discussing autism. You will get much better feedback there. Wrongplanet being one and reddit being another. Wrongplanet has been around for years and is dedicated entirely to autism discussion. The site as a whole is probably still 100 times as busy as teenhelp is in 2024 and all members can relate to some of the same issues.

[Proud90sKid]

Originally Posted by Rika

I've been through it all as a kid and teenager. I don't technically think the doctors etc knew exactly what I had, so autism was what I believe doctors went with. I was a minor at the time, and do not recall very much back in those days. This was back during the 90s and early 00s, though. Family who work in daycare or similar stated it's way more like common these days to know right away if a child or person has autism. I've felt like I accepted that answer even if I was a minor who was unable to advocate or speak up for myself back then.

As an adult getting a dx I do not know, but Google-fu said:

A qualified healthcare professional, like a psychologist or psychiatrist, can diagnose autism in adults. Adults who aren't diagnosed in childhood may benefit from a diagnosis later in life. However, many adults learn to live with their symptoms, which can make diagnosis difficult. One reason an adult ASD diagnosis can be tricky is that you've probably become very good at managing. Although there are no established diagnostic tests for ASD in adults, they are currently in development

I disagree with there being no tests for adults. The ADOS is the gold standard test for diagnosing autism and ADOS module 4 is used on adults.

[Rika]

Originally Posted by Proud90sKid

I disagree with there being no tests for adults. The ADOS is the gold standard test for diagnosing autism and ADOS module 4 is used on adults.

Ah, I knew nothing about it. I just know that as a kid/teen I really didn't have much if any say then about what was going on. I just took medications which were insisted by the school. My parents disagreed with the meds as I got older and was in high school. My parents made me stop taking any medication for autism, and I did just fine in school. Every person is different, but the meds given to me just caused issues.

[TH Anonymous]

[SIZE="a"]I've not been officially diagnosed but I did go through a time a little while back where I suddenly realised there was a very good chance that I might be autistic. And that in itself was mind blowing and life altering in a way.

I had previously spent years thinking I might have all sorts of mental health disorders, including BPD, and had blamed previous trauma on the way that I am now. And when I realised it was probably autism all along...my mind just started reprocessing stuff? Lots of memories started coming to the front of my mind, I started linking memories and previous thoughts to what I had learnt about autism. I became obsessed with learning about autism and read all sorts of things from academic journal articles to personal blogs. I just couldn't stop myself. I ended up writing all these thoughts and memories and stuff I learnt down and essentially created a little autobiography which is many thousands of words long. My social media was all autism related too- following lots of autistic content creators, coaches and writers.

For a while, this satisfied me. I was learning about myself and was happy to know that even though I am the same person I've always been, that I now have reasons for why things happened in my life, why I found certain sensory things difficult, why I've struggled socially and have been bullied etc. I also realised that in turning to reading and the internet, I was trying to create a sense of belonging. I could really relate to the things people talked about regarding autism. But I ended up realising that the internet could only take me so far, and it's not a replacement for having a heart to heart with someone who knows me well (though I'm still yet to have that, I can imagine I will get more *emotionally* from it rather than just reading and processing by myself...but that's just me).

I've found myself becoming slightly sceptical of some content on the internet. I can take things personally quite easily, so I find it helpful to remind myself that what I read online isn't necessarily aimed at me, the other person's situation might be different to me, try not take advice too literally (it's okay to take away ideas, but make it work for you, even if that means adapting things slightly), we never really know how true anything is online or what other people's intentions are when they post asking for help or even helping. And even though the content produced by many autistic influencers/content creators/coaches etc., can be really helpful, over time, you might come to realise that the only person who knows you best, is you.

Naturally, I imagine that my life would've been very different if I hadn't spent a lot of time previously struggling. A mixture of being in unfulfilling friendships and relationships, being bullied and taken advantage of, spending a lot of time feeling anxious and depressed and a lot of other things meant that when I left school and university, I pretty much didn't really know myself, let alone what I wanted to do with my life. I tried to be something I couldn't be and felt very anxious about where my life was heading. Any time I tried to do something different (I went from thinking I could be a teacher to thinking I could be a counsellor) it didn't work out. I realise that even though I'm not very good at 'masking' or trying to come across as neurotypical, I did end up losing a lot of my identity. Or perhaps I never really formed much of one to begin with. So I've spent the last few years trying to find out more about myself. What kind of things do I find interesting, what do I like to read or watch or play etc. I realised that my 'default mode' with others who want to be friends with me is to go along with them, so they might watch a particular series and tell me to watch it, so I will, they will say who their favourite characters are and I feel like I have to go along with that (rather than offer my own opinion). It's been helpful to me to separate what others like or want from what I like. There's no harm in occasionally being influenced by a friend or a loved one, but when you find yourself always going along with everyone else, it can help to take a step back and think about what you actually want.

Doing this has helped me to think about what job I could do too. I never really thought much about jobs before. But I've learnt that, for me, I have to think about what interests me, what skills do I have or could improve on, what do I struggle with (or perhaps what to avoid) and also thinking about sensory and social side of things too. I now know that I have to prepare a lot in terms of getting the right kind of experience (e.g. volunteering) and researching the kind of questions that might come in interviews or learning from each interview I have. For me, I rely a lot on memory and writing, so I'm often writing things down to help me prepare. If I prepare, I feel less anxious and a bit more relaxed. I realise that these are probably things that younger people do in school, and while I do sometimes feel a bit left behind in comparison to people my age, I try not to dwell on it too much (and try not to compare myself to others either). I can't change the past but I can try to help myself now and in the future.

So in short, things that have helped me include:

• Self-reflecting and writing things down
• Learning about myself more
• Learning about autism (though also remaining slightly critical of reading stuff online)
• Thinking about what I need in terms of friendships, employment etc.
• Talking to people who know me well about autism

[/size]

[Butterscotch.]

Hey Dez, I'm glad you were finally able to receive an answer but I am sorry about your BPD diagnosis being taken away from you. I think that probably feels the most challenging right now; because you've been told for years that you have BPD and you were led to believe that. To throw away what you know, your coping skills, and so on forth will be incredibly challenging. However, I do want to say that I don't think it's a good idea to do that! Keep those coping skills and what you know, and use them with your new diagnosis.

Being diagnosed with Autism is nothing like being diagnosed with cancer or any fatal illness, it's not the end of the road for you. It just means you have so much more to learn, a lot to research, groups to join, people to meet. I don't want to suggest this group because they were pretty hostile towards me but it might be useful for you! Actually Autistic on Facebook is generally a welcoming group, they allow anonymous posting, and they are against anything that hurts Autism-centric philosophy — such as ABA therapy or @uti$m $pe@ks.

Of course, you're more than welcome to ask me any questions or concerns you might have! You've got this, wear the infinity rainbow with pride.

[This_is_the_greatest_plan]

Youve been through a change, even it doesnt feel very meaningful because its just a "label". I can see youre really curious about what to do with yourself and what support there is and wish you luck!

[Ennui.]

Oh, as an update, my main therapist doesn’t see autism and says BPD would be closer. But my group therapist who I meet with individually sometimes sees autism. I’m like ffs.

[TH Anonymous]

[SIZE="a"]That sounds really frustrating. Not sure if it helps at all but it's often quoted from research that autistic women are normally misdiagnosed with BPD first (symptoms can seem similar). I also think that mental health and neurodiversity are seen as two separate 'silos'...so mental health professionals may not have much awareness, knowledge or understanding of neurodiversity. It's very easy to then 'see' everything from a mental health lens which might explain why your main therapist doesn't see autism and says BPD would be closer.[/size]