The Student Room Group

Is it worth getting an autism diagnosis as an adult?

I’m 20 and my whole life I’ve really struggled to make friends to the point I don’t have any friends at all atm and haven’t for years. I’ve always felt that people pick up a weird vibe/aura about me that makes them not like me but they will never tell me why. I’m on a bit of a mental health/self acceptance journey at the minute and I think I could be autistic.

I’ve done online self assessments and all have said that I have the traits of autism so I’m wondering if it’s worth getting a professional assessment and a diagnosis. I don’t particularly want professional help/support whether I’m autistic or not, I just think it could be helpful for me to discover that there’s a reason why I’m like I am and it’s not all entirely my fault or any way I’m deliberately behaving. And I’d take extra time on uni exams if I could get it but I’m not desperate for it and don’t really think I need it lol.

I’m also slightly worried that having a disability/mental health label attached to my medical records and having the stigma of that might affect me. Obviously I know that most jobs can’t look at medical records without permission but I’m already having problems with doctors not taking me seriously and dismissing me so I’m worried that a label like that might make that problem worse. Also kinda worried that having the label would make me resign myself to a life of being alone and shutting myself away if I know there’s a concrete reason why people find me off putting.

Would anyone here who was diagnosed autistic as an adult be able to give me an idea of the pros and cons that come with it and whether it’s something worth seeking?
Hi Im not diagnosed yet but I can provide some insight as Im quite immersed the autism community.
You are correct that your employers cannot access your medical records so the only way they would know is if you asked for reasonable adjustments in employment because of your diagnosis. Do you think this is something you would need? If yes then its a good idea to get a diagnosis so you can ask for these, but be aware that some employers can dislike giving adjustments regardless of diagnosis and this doesn’t guarantee you adjustments but it means you have evidence and I think if they refuse this you might be able to take legal action if you really wanted to, you’d have to look into specifics if god forbid that happened to you. But overall if you think you need accommodations in employment seeking a diagnosis is a good idea.
For uni (assuming you’re in uni now) they’ll only give you adjustments like extra time if you need them as all support universally should be needs based, you just need documentation to back that need up. If you dont need extra time it can actually be detrimental to take it in some cases so consider that if you were ever offered it. Also if you’re in uni now then unless you go private the chances are once you get a diagnosis you’ll have already left uni, although some unis will give adjustments based on a referral for suspected autism so look into whether this is the case for your university.
If you dont think you’d need support after your diagnosis then you need to weigh up which option (if you chose to seek diagnosis) would be best for you because (assuming you’re in the uk) you can get an nhs diagnosis (very long wait) or a private diagnosis (very costly). If however you dont need documentation for support or anything and you dont have money to throw around I’d say go with the nhs if you can get a referral because if you dont need it immediately its not worth spending a new thousand quid on, but if you’re desperate to have validation for your identity it might be a good option.
With the idea that the label could be like a self fulfilling prophecy I would say that Ive found the opposite since getting referred and kind of amongst friends identifying with being autistic. People are more understanding and often happier to explain things (although this obviously will vary and many of my friends have nd family members or are nd themselves). Also its meant that I can find videos and online info about stuff which makes me feel more confident and I can learn what strategies work for me to help myself with my traits.
Best of luck with everything!
Reply 2
Hello

I am autistic and am also 20. I was diagnosed just after my seventeenth birthday, so not quite as an adult, but definitely later than I should have been. The first thing which I think is important to acknowledge is that the criteria for being autistic is a lot more complex than widely believed/understood, and social difficulties are only one part of that.

As the other reply said, the process is often a long and arduous one, and if you are sure you do not need a diagnosis for the aid which it would provide, I would question why you would need one at all. You can treat yourself like an autistic person, considering your sensory needs, emotional development, and social difficulties, without an official diagnosis.

As someone who does need a lot of additional help and support, which needs to be proven by copious letters from professionals, letters of diagnosis, etc., if you do not need extra time (which, by the way, is currently being phased out and replaced in many places by either rest breaks or other accommodations), then it’s unlikely you would receive it. However, you may find that a lot of your self-image is heavily affected by internalised abelism. This is by no means an insult, as this is painfully common, and my Dad and I have both suffered with this. If you are autistic, you are probably used to using a lot of coping mechanisms in life crafted to deal with the trauma of an undiagnosed autistic experience. Just because you are managing without aids, doesn't mean they wouldn't greatly benefit you. I also have a joint condition (comorbidities are very very common with autism), and technically, I can do things without my compression gloves, however not using them does cause me to endure a lot more pain and fatigue than I otherwise would have done (especially in winter). What I mean to say is, that an ASD diagnosis can make you more aware of how much you are actually struggling (which can be painful); however, it can also then act as a guide to find ways to deal with issues you hadn’t necessarily realised you were struggling with. I didn't quite realise how much unnecessary pain I was dealing with until I put on the gloves (I hope the metaphor is working).

There is stigma. I have had bad experiences of being infantilised, ignored, belittled, and disregarded due to being autistic. However, I have also had much better experiences at the doctors (I do think I genuinely have a really good GP tho, so it is also dependant on people) where since my diagnosis, it’s been a lot easier to be taken seriously, leading to quite quick ADHD diagnosis etc. It’s a double-edged sword which often leaves you more vulnerable. But it can have its positives too. I’ve found it a bit easier to assert my boundaries, and understand myself in a way which is invaluable.

Currently, I haven’t been able to work due to my disabilities (my joint problems are actually the main reason here, not just being autistic), however, my dad, who was diagnosed just before me (in his 50s), worked his entire life, and since having the diagnosis has gotten a different job and been able to ask for accommodations which he needed. Disclosing your disability is a personal choice, and not for someone else to tell you to or not to do.

Friendships are difficult. I have three friends, two of which are from year seven and the other from later in secondary school. Also, one of these friends I see maybe twice a year since she’s a med student and quite far away. Personally, I’m the sort of autistic who really doesn't need much social contact; in fact, I much prefer my own company most of the time. I do, however, currently live with a fully neurodiverse family, which likely quells any need for more socialisation. I think friendships are hard when you’re autistic—if you are—however, I think putting less pressure on yourself to socialise in ‘normal’ ways or as frequently as others do, definitely can help.

Also, on the being found to be off-putting thing… I’m wondering if this has something to do with the ‘uncanny valley’ thing I’ve heard people talk about, especially on TikTok. Honestly, this isn’t as cut and dry as people make it out to be. Lots of autistic people are extroverts and incredibly social. I mean, personally, I’m an introvert, but I’ve always been able to make friends by accident without realising it. I’m not about to give advice on making friends, because I don't have that many and am not very good at it. However, I think a lot of making friends is the setting, like going to a club which you're interested in to find like-minded people. An autistic family friend of mine told me to try a sports/active club as you have more passive interactions with people, which require less talking but can still foster relationships.

A diagnosis is a very personal thing, but if I were to list MY PERSONAL pros and cons, it would look a bit like this:

PROS:

Contextualising the past and present, especially things which I previously didn't understand, like my meltdowns, burnout, selective mutism, sensory issues

Getting help at school, going to a specialised sixth-form

Getting lots of help at my uni (I'm starting in September, but we’ve already set most of it up)

Learning about how to self-regulate emotions etc

Getting understanding and acceptance from family and friends

Becoming more aware of my difficulties so that I can be more realistic and rational when approaching tasks/situations, and knowing where my limits lie so I can make informed choices about how, when and if to challenge myself

CONS:

Facing occasional ableism

The emotional turmoil felt in the months after the diagnosis

The ‘what ifs’ about if only I had been diagnosed sooner, etc

Getting family and friends to understand can be hard and in some cases impossible, and somehow understanding your disability and then seeing people fail to accommodate it in very simple ways again and again can be worse than just not knowing sometimes, honestly


I would argue that knowing is better than not knowing. Whether you are or aren't autistic, I think that that knowledge is important. However, this is totally personal, and nobody should ever say, ‘You need to do X’, or ‘This is definitely the right decision’ because that's only something you can decide for yourself.

I hope this reply is somewhat useful. If you have any questions, I’m happy to do my best to answer.
Original post by fhrhfejndj
Hello
I am autistic and am also 20. I was diagnosed just after my seventeenth birthday, so not quite as an adult, but definitely later than I should have been. The first thing which I think is important to acknowledge is that the criteria for being autistic is a lot more complex than widely believed/understood, and social difficulties are only one part of that.
As the other reply said, the process is often a long and arduous one, and if you are sure you do not need a diagnosis for the aid which it would provide, I would question why you would need one at all. You can treat yourself like an autistic person, considering your sensory needs, emotional development, and social difficulties, without an official diagnosis.
As someone who does need a lot of additional help and support, which needs to be proven by copious letters from professionals, letters of diagnosis, etc., if you do not need extra time (which, by the way, is currently being phased out and replaced in many places by either rest breaks or other accommodations), then it’s unlikely you would receive it. However, you may find that a lot of your self-image is heavily affected by internalised abelism. This is by no means an insult, as this is painfully common, and my Dad and I have both suffered with this. If you are autistic, you are probably used to using a lot of coping mechanisms in life crafted to deal with the trauma of an undiagnosed autistic experience. Just because you are managing without aids, doesn't mean they wouldn't greatly benefit you. I also have a joint condition (comorbidities are very very common with autism), and technically, I can do things without my compression gloves, however not using them does cause me to endure a lot more pain and fatigue than I otherwise would have done (especially in winter). What I mean to say is, that an ASD diagnosis can make you more aware of how much you are actually struggling (which can be painful); however, it can also then act as a guide to find ways to deal with issues you hadn’t necessarily realised you were struggling with. I didn't quite realise how much unnecessary pain I was dealing with until I put on the gloves (I hope the metaphor is working).
There is stigma. I have had bad experiences of being infantilised, ignored, belittled, and disregarded due to being autistic. However, I have also had much better experiences at the doctors (I do think I genuinely have a really good GP tho, so it is also dependant on people) where since my diagnosis, it’s been a lot easier to be taken seriously, leading to quite quick ADHD diagnosis etc. It’s a double-edged sword which often leaves you more vulnerable. But it can have its positives too. I’ve found it a bit easier to assert my boundaries, and understand myself in a way which is invaluable.
Currently, I haven’t been able to work due to my disabilities (my joint problems are actually the main reason here, not just being autistic), however, my dad, who was diagnosed just before me (in his 50s), worked his entire life, and since having the diagnosis has gotten a different job and been able to ask for accommodations which he needed. Disclosing your disability is a personal choice, and not for someone else to tell you to or not to do.
Friendships are difficult. I have three friends, two of which are from year seven and the other from later in secondary school. Also, one of these friends I see maybe twice a year since she’s a med student and quite far away. Personally, I’m the sort of autistic who really doesn't need much social contact; in fact, I much prefer my own company most of the time. I do, however, currently live with a fully neurodiverse family, which likely quells any need for more socialisation. I think friendships are hard when you’re autistic—if you are—however, I think putting less pressure on yourself to socialise in ‘normal’ ways or as frequently as others do, definitely can help.
Also, on the being found to be off-putting thing… I’m wondering if this has something to do with the ‘uncanny valley’ thing I’ve heard people talk about, especially on TikTok. Honestly, this isn’t as cut and dry as people make it out to be. Lots of autistic people are extroverts and incredibly social. I mean, personally, I’m an introvert, but I’ve always been able to make friends by accident without realising it. I’m not about to give advice on making friends, because I don't have that many and am not very good at it. However, I think a lot of making friends is the setting, like going to a club which you're interested in to find like-minded people. An autistic family friend of mine told me to try a sports/active club as you have more passive interactions with people, which require less talking but can still foster relationships.
A diagnosis is a very personal thing, but if I were to list MY PERSONAL pros and cons, it would look a bit like this:
PROS:

Contextualising the past and present, especially things which I previously didn't understand, like my meltdowns, burnout, selective mutism, sensory issues

Getting help at school, going to a specialised sixth-form

Getting lots of help at my uni (I'm starting in September, but we’ve already set most of it up)

Learning about how to self-regulate emotions etc

Getting understanding and acceptance from family and friends

Becoming more aware of my difficulties so that I can be more realistic and rational when approaching tasks/situations, and knowing where my limits lie so I can make informed choices about how, when and if to challenge myself

CONS:

Facing occasional ableism

The emotional turmoil felt in the months after the diagnosis

The ‘what ifs’ about if only I had been diagnosed sooner, etc

Getting family and friends to understand can be hard and in some cases impossible, and somehow understanding your disability and then seeing people fail to accommodate it in very simple ways again and again can be worse than just not knowing sometimes, honestly


I would argue that knowing is better than not knowing. Whether you are or aren't autistic, I think that that knowledge is important. However, this is totally personal, and nobody should ever say, ‘You need to do X’, or ‘This is definitely the right decision’ because that's only something you can decide for yourself.
I hope this reply is somewhat useful. If you have any questions, I’m happy to do my best to answer.

Interesting, haven’t heard that extra time is being phased out. Where did you heard this may I ask?
Reply 4
Original post by Anonymous
Interesting, haven’t heard that extra time is being phased out. Where did you heard this may I ask?

I heard this at my exam centre during A levels. I can't remember the whole conversation, but the head of SEN was discussing this with me and my mum. As this is happening for A levels, I believe (maybe GCSE too, probably), I'm guessing it is either already happening or will happen for Unis, too, as they usually continue exam stuff from A levels most of the time. I think rest breaks are more common now in most circumstances.
Also, this was over a year ago when I heard this, so it might not be the same now, but I don't think it's likely that extra time would be suddenly granted more again.
Original post by fhrhfejndj
I heard this at my exam centre during A levels. I can't remember the whole conversation, but the head of SEN was discussing this with me and my mum. As this is happening for A levels, I believe (maybe GCSE too, probably), I'm guessing it is either already happening or will happen for Unis, too, as they usually continue exam stuff from A levels most of the time. I think rest breaks are more common now in most circumstances.
Also, this was over a year ago when I heard this, so it might not be the same now, but I don't think it's likely that extra time would be suddenly granted more again.

That is interesting. I am aware that they made it harder for students to get extra time, for example if you need it for a ‘complex condition’ which just means that you don’t have below average standardised scores then the centre has to prove that the student cant cope with just rest breaks and the normal amount of time. However, they introduces form nines for extra time due to complex needs last year which (if you have a diagnosis) actually makes it easier to get extra time as you dont have to apply for it from the exam boards. I do not think that removing extra time as an option is a good idea, I have friends who are autistic and went through exams without it and they could have done so so much better even though they had other adjustments like rest breaks they couldn’t get down what they knew in the allotted time. I’ll be interested to see how this develops or if it is more clearly mentioned in the next jcq regulations. Thanks for the info.

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