Therapists suspects I (17F) have autism but can’t diagnose. Is a diagnosis worth it?
My therapist has talked to me about this, she suspects that I could be autistic because of certain traits that I have but she cannot diagnose me. I am under iapt and currently in step 4 therapy, I have been engaging with camhs since last year and they still haven’t diagnosed me.
I’ve been told that if I want to get tested for an official diagnosis I would have to go to my GP. My GP checks on me every couple of weeks so I don’t think I would have an issue getting a referral for an assessment. I’m just wondering if it’s worth it, I’ve heard that the waiting lists are long and that they speak to your parents. Which I’m not keen about, my parents haven’t been paying much attention to me when I’ve been struggling due to the fact that I’ve got 6 other siblings. Plus they’re somewhat opposed to me getting any type of label or diagnosis.
Please let me know what you or your friend/family member’s experience was with getting an autism diagnosis, whether getting a diagnosis helped you or not and what the process is to get diagnosed with autism as a 17 year old (I don’t turn 18 until next year)
tl;dr therapists suspects I have autism, unsure of whether or not try get an assessment. Please tell me autism diagnosis experiences and if you think it would be worth it.
I’ve been told that if I want to get tested for an official diagnosis I would have to go to my GP. My GP checks on me every couple of weeks so I don’t think I would have an issue getting a referral for an assessment. I’m just wondering if it’s worth it, I’ve heard that the waiting lists are long and that they speak to your parents. Which I’m not keen about, my parents haven’t been paying much attention to me when I’ve been struggling due to the fact that I’ve got 6 other siblings. Plus they’re somewhat opposed to me getting any type of label or diagnosis.
Please let me know what you or your friend/family member’s experience was with getting an autism diagnosis, whether getting a diagnosis helped you or not and what the process is to get diagnosed with autism as a 17 year old (I don’t turn 18 until next year)
tl;dr therapists suspects I have autism, unsure of whether or not try get an assessment. Please tell me autism diagnosis experiences and if you think it would be worth it.
Original post by suenami
My therapist has talked to me about this, she suspects that I could be autistic because of certain traits that I have but she cannot diagnose me. I am under iapt and currently in step 4 therapy, I have been engaging with camhs since last year and they still haven’t diagnosed me.
I’ve been told that if I want to get tested for an official diagnosis I would have to go to my GP. My GP checks on me every couple of weeks so I don’t think I would have an issue getting a referral for an assessment. I’m just wondering if it’s worth it, I’ve heard that the waiting lists are long and that they speak to your parents. Which I’m not keen about, my parents haven’t been paying much attention to me when I’ve been struggling due to the fact that I’ve got 6 other siblings. Plus they’re somewhat opposed to me getting any type of label or diagnosis.
Please let me know what you or your friend/family member’s experience was with getting an autism diagnosis, whether getting a diagnosis helped you or not and what the process is to get diagnosed with autism as a 17 year old (I don’t turn 18 until next year)
tl;dr therapists suspects I have autism, unsure of whether or not try get an assessment. Please tell me autism diagnosis experiences and if you think it would be worth it.
I’ve been told that if I want to get tested for an official diagnosis I would have to go to my GP. My GP checks on me every couple of weeks so I don’t think I would have an issue getting a referral for an assessment. I’m just wondering if it’s worth it, I’ve heard that the waiting lists are long and that they speak to your parents. Which I’m not keen about, my parents haven’t been paying much attention to me when I’ve been struggling due to the fact that I’ve got 6 other siblings. Plus they’re somewhat opposed to me getting any type of label or diagnosis.
Please let me know what you or your friend/family member’s experience was with getting an autism diagnosis, whether getting a diagnosis helped you or not and what the process is to get diagnosed with autism as a 17 year old (I don’t turn 18 until next year)
tl;dr therapists suspects I have autism, unsure of whether or not try get an assessment. Please tell me autism diagnosis experiences and if you think it would be worth it.
I’m an 18 year old male who has been diagnosed with ASD for a while now.
Afaik, the characteristic signs of ASD present differently in males and females, thus the extent of treatment and ease of diagnosis should differ considerably, hence recalling my experiences won’t help you much.
What is there to lose in getting diagnosed? If it turns out you are in need of some form of support for it, it’s probably worth doing.
I'm in an identical situation to you, (17F) and I've decided to not get a diagnosis. I'll share my reasoning with you in case it resonates with you and helps.
1. I have low support needs so getting a diagnosis won't really benefit me. Being medically recognised is enough for me.
2. I'm diagnosed with anxiety, so I get access arrangments that also satisfy my needs as an autistic person (I'm also diagnosed as having a slow processing speed which is linked with autism anyway)
3. As a POC, i do not need another label for the system to discriminate against me with.
4. It's very likely that even if i were to try and get diagnosed, I would probably walk away without a diagnosis due to prejudice (research on ASD is only aimed at cis white males) and lack of research. It's not worth my time to rot on an NHS waiting list, and I don't have the money to go private.
1. I have low support needs so getting a diagnosis won't really benefit me. Being medically recognised is enough for me.
2. I'm diagnosed with anxiety, so I get access arrangments that also satisfy my needs as an autistic person (I'm also diagnosed as having a slow processing speed which is linked with autism anyway)
3. As a POC, i do not need another label for the system to discriminate against me with.
4. It's very likely that even if i were to try and get diagnosed, I would probably walk away without a diagnosis due to prejudice (research on ASD is only aimed at cis white males) and lack of research. It's not worth my time to rot on an NHS waiting list, and I don't have the money to go private.
(edited 1 year ago)
I’m not diagnosed autistic but I have been in the same boat as you where they thought I might be (I never engaged with them though so was never assessed formally). I think getting a diagnosis is a very personal decision and really depends on what your goals are. I’ve heard from a few people that are diagnosed that they found the whole process to be very unsettling, a little patronising and some had to seek private diagnosis as the nhs tends to have has a very “set” view on autism, if you don’t tick the boxes you won’t get the diagnosis, which sucks if you tend to mask a lot. HOWEVER, if the autism has a big impact on your life then it can really help to have that diagnosis as you’ll then be able to access the support services, and everyone will have a different experience with the assessments. Getting the diagnosis itself can have its pros and cons, it can open the door to more support and accommodations, but it can also lead to bias and discrimination. It would really be worth drawing up some pros and cons, what you’d like to achieve by getting diagnosed, whether you think you’d need more support with the autism or if your current plan is working for you 
Original post by suenami
My therapist has talked to me about this, she suspects that I could be autistic because of certain traits that I have but she cannot diagnose me. I am under iapt and currently in step 4 therapy, I have been engaging with camhs since last year and they still haven’t diagnosed me.
I’ve been told that if I want to get tested for an official diagnosis I would have to go to my GP. My GP checks on me every couple of weeks so I don’t think I would have an issue getting a referral for an assessment. I’m just wondering if it’s worth it, I’ve heard that the waiting lists are long and that they speak to your parents. Which I’m not keen about, my parents haven’t been paying much attention to me when I’ve been struggling due to the fact that I’ve got 6 other siblings. Plus they’re somewhat opposed to me getting any type of label or diagnosis.
Please let me know what you or your friend/family member’s experience was with getting an autism diagnosis, whether getting a diagnosis helped you or not and what the process is to get diagnosed with autism as a 17 year old (I don’t turn 18 until next year)
tl;dr therapists suspects I have autism, unsure of whether or not try get an assessment. Please tell me autism diagnosis experiences and if you think it would be worth it.
I’ve been told that if I want to get tested for an official diagnosis I would have to go to my GP. My GP checks on me every couple of weeks so I don’t think I would have an issue getting a referral for an assessment. I’m just wondering if it’s worth it, I’ve heard that the waiting lists are long and that they speak to your parents. Which I’m not keen about, my parents haven’t been paying much attention to me when I’ve been struggling due to the fact that I’ve got 6 other siblings. Plus they’re somewhat opposed to me getting any type of label or diagnosis.
Please let me know what you or your friend/family member’s experience was with getting an autism diagnosis, whether getting a diagnosis helped you or not and what the process is to get diagnosed with autism as a 17 year old (I don’t turn 18 until next year)
tl;dr therapists suspects I have autism, unsure of whether or not try get an assessment. Please tell me autism diagnosis experiences and if you think it would be worth it.
I would encourage you to get a diagnosis so you get proper support at school then at uni if you want to go.
Hi thanks
I have some support at college, no exams arrangements but I do have these quiet rooms I can go to/they’re lenient with attendance (was at 60% attendance for year 12)
I doubt I would get a diagnosis before my exams in year 13 so I guess the reason why I would try get assessed is just for peace of mind. I struggle a lot with social situations and understanding conversations, it would prob make me feel a bit better knowing it’s not my fault.
I’m not sure if I want to go to university but I am curious about employment and possible discrimination. I know they shouldn’t but do employers tend to discriminate based on mental illness/disorders and when do you tell them about a disorder for adjustments?
I have some support at college, no exams arrangements but I do have these quiet rooms I can go to/they’re lenient with attendance (was at 60% attendance for year 12)
I doubt I would get a diagnosis before my exams in year 13 so I guess the reason why I would try get assessed is just for peace of mind. I struggle a lot with social situations and understanding conversations, it would prob make me feel a bit better knowing it’s not my fault.
I’m not sure if I want to go to university but I am curious about employment and possible discrimination. I know they shouldn’t but do employers tend to discriminate based on mental illness/disorders and when do you tell them about a disorder for adjustments?
Original post by suenami
Hi thanks
I have some support at college, no exams arrangements but I do have these quiet rooms I can go to/they’re lenient with attendance (was at 60% attendance for year 12)
I doubt I would get a diagnosis before my exams in year 13 so I guess the reason why I would try get assessed is just for peace of mind. I struggle a lot with social situations and understanding conversations, it would prob make me feel a bit better knowing it’s not my fault.
I’m not sure if I want to go to university but I am curious about employment and possible discrimination. I know they shouldn’t but do employers tend to discriminate based on mental illness/disorders and when do you tell them about a disorder for adjustments?
I have some support at college, no exams arrangements but I do have these quiet rooms I can go to/they’re lenient with attendance (was at 60% attendance for year 12)
I doubt I would get a diagnosis before my exams in year 13 so I guess the reason why I would try get assessed is just for peace of mind. I struggle a lot with social situations and understanding conversations, it would prob make me feel a bit better knowing it’s not my fault.
I’m not sure if I want to go to university but I am curious about employment and possible discrimination. I know they shouldn’t but do employers tend to discriminate based on mental illness/disorders and when do you tell them about a disorder for adjustments?
If you don't feel the diagnosis will benefit you in the coming years and it's simply for your peace of mind, why go through the hassle? You've already been told by a professional. If you identify with it, you do. No one else has a right to tell you what you can and can't identify with.
Employers aren't meant to discriminate, but they often do. Most of the time, they can be very performative, so I'm always wary of applying to a job that expects me to disclose a mental illness. Personally, it's a label I identify with, and it's nice to know that there's a reason behind the strange things I do, but I don't need outside bias from uneducated people who may essentially make my life harder. So I chose to take a different route. That is just my 2 cents though. Do whatever makes you feel the most comfortable and happy. Your diagnosis and what you do with it is your business.
Your GP will move sun and moon to avoid referring you btw
Original post by Little pecker
Your GP will move sun and moon to avoid referring you btw
^^ facts.
Original post by suenami
Hi thanks
I have some support at college, no exams arrangements but I do have these quiet rooms I can go to/they’re lenient with attendance (was at 60% attendance for year 12)
I doubt I would get a diagnosis before my exams in year 13 so I guess the reason why I would try get assessed is just for peace of mind. I struggle a lot with social situations and understanding conversations, it would prob make me feel a bit better knowing it’s not my fault.
I’m not sure if I want to go to university but I am curious about employment and possible discrimination. I know they shouldn’t but do employers tend to discriminate based on mental illness/disorders and when do you tell them about a disorder for adjustments?
I have some support at college, no exams arrangements but I do have these quiet rooms I can go to/they’re lenient with attendance (was at 60% attendance for year 12)
I doubt I would get a diagnosis before my exams in year 13 so I guess the reason why I would try get assessed is just for peace of mind. I struggle a lot with social situations and understanding conversations, it would prob make me feel a bit better knowing it’s not my fault.
I’m not sure if I want to go to university but I am curious about employment and possible discrimination. I know they shouldn’t but do employers tend to discriminate based on mental illness/disorders and when do you tell them about a disorder for adjustments?
Unis tend to be much more accommodating than employers, particularly if you would be looking to go into more “professional” fields I.e anything corporate, healthcare, sciencey as opposed to more creative fields. In terms of having that peace of mind that it’s not your fault, do you think that would be something you’d be able to work on with your current therapist regardless of diagnosis? I struggle massively with the same and did a lot of work on coming to terms with those struggles in terms of not judging myself for them and also ways to start overcoming them (whether you’re autistic or not, those issues still aren’t your fault, there’s nothing inherently wrong with you,)
I am currently on the waiting list for an adult autism assessment (18M) and when I was deliberating whether to seek formal diagnosis I made a pros and cons list that which I guess I could share here. For me getting referred was no more painful than going to see the GP normally as he agreed with me that it was probable I have autism. My GP also gave me a "working diagnosis".
Pros
-Help me to stop being so hard on myself for not fitting in and embrace being different. (self acceptance)
-Gives me validation and recognition therefore reassuring me that it isn't "all in my head"
-May help me explain difficulties and strange things about myself to other people.
-Will allow me to access support that I feel benefits me at university and potentially employment.
-Might help me to be better understood when speaking to health professionals
-Will give me certainty and confidence in who I am. By this I mean I am 99% confident that I am autistic and hopefully a professional diagnosis will reduce that 1% doubt.
Cons
-The waiting list can be very long depending on your area (I was told roughly 4 years)
-You could face some discrimination in employment. A counterpoint though is that if you are autistic you would have probably faced this anyway as you may have some strange quirks etc that would cause an employer to not like you or think something wrong of you. Therefore at least by getting diagnosed you can explain this sort of thing to your employer which might stop them from off-hiring you (or perhaps not it really depends)
-Depending on who you are and your personal autism it may feel like an uphill battle getting diagnosed, perhaps making it not worth the effort/stress. There is also a small chance you could get misdiagnosed.
-They do ask to speak to an adult who knew you in childhood but in specific cases I think this might not be necessary or could be someone who isn't that close to you (i.e not a parent) or other alternatives.
If you identify and relate to the autism and people with autism then I would recommend seeking formal diagnosis however it is a personal decision only you can make and you should not feel pressured by anyone else to do it. If you do want to get a diagnosis I would recommend talking to your GP as soon as your comfortable to as the waiting times are long and you might not want to wait even longer. Hope that helps.
Pros
-Help me to stop being so hard on myself for not fitting in and embrace being different. (self acceptance)
-Gives me validation and recognition therefore reassuring me that it isn't "all in my head"
-May help me explain difficulties and strange things about myself to other people.
-Will allow me to access support that I feel benefits me at university and potentially employment.
-Might help me to be better understood when speaking to health professionals
-Will give me certainty and confidence in who I am. By this I mean I am 99% confident that I am autistic and hopefully a professional diagnosis will reduce that 1% doubt.
Cons
-The waiting list can be very long depending on your area (I was told roughly 4 years)
-You could face some discrimination in employment. A counterpoint though is that if you are autistic you would have probably faced this anyway as you may have some strange quirks etc that would cause an employer to not like you or think something wrong of you. Therefore at least by getting diagnosed you can explain this sort of thing to your employer which might stop them from off-hiring you (or perhaps not it really depends)
-Depending on who you are and your personal autism it may feel like an uphill battle getting diagnosed, perhaps making it not worth the effort/stress. There is also a small chance you could get misdiagnosed.
-They do ask to speak to an adult who knew you in childhood but in specific cases I think this might not be necessary or could be someone who isn't that close to you (i.e not a parent) or other alternatives.
If you identify and relate to the autism and people with autism then I would recommend seeking formal diagnosis however it is a personal decision only you can make and you should not feel pressured by anyone else to do it. If you do want to get a diagnosis I would recommend talking to your GP as soon as your comfortable to as the waiting times are long and you might not want to wait even longer. Hope that helps.
(edited 1 year ago)
Thank you for the pros and cons that’s super helpful, honestly never really thought that I could have autism before my therapist brought it up but I was sure that I had some sort of diagnosable mental illness/disorder and I find it frustrating that I’ve gone through a lot of therapy and MH services still haven’t diagnosed me.
I did want some sort of diagnosis so that it’s easier for me to access support with MH services and if I go university. They usually give me 6 weeks of whatever therapy and then leave me alone for a couple of months and I end up having a breakdown again and it repeats, which sucks. I don’t know, maybe they will take me more seriously with a diagnosis.
As for working on how I feel like things are my fault, I’ve kind of touched on it with my therapist. She’s basically told me that my mind is too negative and I just need to ignore my negative thoughts. I’m trying to but it’s not really a good long term solution. Hopefully we can work it on further.
I did want some sort of diagnosis so that it’s easier for me to access support with MH services and if I go university. They usually give me 6 weeks of whatever therapy and then leave me alone for a couple of months and I end up having a breakdown again and it repeats, which sucks. I don’t know, maybe they will take me more seriously with a diagnosis.
As for working on how I feel like things are my fault, I’ve kind of touched on it with my therapist. She’s basically told me that my mind is too negative and I just need to ignore my negative thoughts. I’m trying to but it’s not really a good long term solution. Hopefully we can work it on further.
Original post by suenami
Thank you for the pros and cons that’s super helpful, honestly never really thought that I could have autism before my therapist brought it up but I was sure that I had some sort of diagnosable mental illness/disorder and I find it frustrating that I’ve gone through a lot of therapy and MH services still haven’t diagnosed me.
I did want some sort of diagnosis so that it’s easier for me to access support with MH services and if I go university. They usually give me 6 weeks of whatever therapy and then leave me alone for a couple of months and I end up having a breakdown again and it repeats, which sucks. I don’t know, maybe they will take me more seriously with a diagnosis.
As for working on how I feel like things are my fault, I’ve kind of touched on it with my therapist. She’s basically told me that my mind is too negative and I just need to ignore my negative thoughts. I’m trying to but it’s not really a good long term solution. Hopefully we can work it on further.
I did want some sort of diagnosis so that it’s easier for me to access support with MH services and if I go university. They usually give me 6 weeks of whatever therapy and then leave me alone for a couple of months and I end up having a breakdown again and it repeats, which sucks. I don’t know, maybe they will take me more seriously with a diagnosis.
As for working on how I feel like things are my fault, I’ve kind of touched on it with my therapist. She’s basically told me that my mind is too negative and I just need to ignore my negative thoughts. I’m trying to but it’s not really a good long term solution. Hopefully we can work it on further.
In your case you should probably do some more research into autism. Listen to autistic people and their struggles and see if you relate to them. Perhaps also look up "autistic burnout" as it could be something you are experiencing.
From my personal experience trying to just ignore negative thoughts doesn't work and only bottles them up later when they all come at once but I am not a therapist. Sometimes negative thoughts need to be tackled to be removed but that is just my opinion. Perhaps when you have negative thoughts you should instead remind yourself that every cloud has a silver lining: try to find a something good that comes from the bad. I know this is easier said than done but is probably a good habit to become less pessimistic. You could also try meditating, guided breathing or cold showers as these are things that have helped me when I get in a rut.
Above all keep telling and reminding yourself that things will get easier. Your mental health journey is not a tragedy but a comeback story. As 50 cent said "Sunny days wouldn't be special if it wasn't for rain... Joy wouldn't feel so good if it wasn't for pain.", I know strange quote but I like it. Remember you are an amazing human being and I wish you luck with your mental health.
Original post by cherryblossomed
I'm in an identical situation to you, (17F) and I've decided to not get a diagnosis. I'll share my reasoning with you in case it resonates with you and helps.
1. I have low support needs so getting a diagnosis won't really benefit me. Being medically recognised is enough for me.
2. I'm diagnosed with anxiety, so I get access arrangments that also satisfy my needs as an autistic person (I'm also diagnosed as having a slow processing speed which is linked with autism anyway)
3. As a POC, i do not need another label for the system to discriminate against me with.
4. It's very likely that even if i were to try and get diagnosed, I would probably walk away without a diagnosis due to prejudice (research on ASD is only aimed at cis white males) and lack of research. It's not worth my time to rot on an NHS waiting list, and I don't have the money to go private.
1. I have low support needs so getting a diagnosis won't really benefit me. Being medically recognised is enough for me.
2. I'm diagnosed with anxiety, so I get access arrangments that also satisfy my needs as an autistic person (I'm also diagnosed as having a slow processing speed which is linked with autism anyway)
3. As a POC, i do not need another label for the system to discriminate against me with.
4. It's very likely that even if i were to try and get diagnosed, I would probably walk away without a diagnosis due to prejudice (research on ASD is only aimed at cis white males) and lack of research. It's not worth my time to rot on an NHS waiting list, and I don't have the money to go private.
What do you mean by medically recognised
Original post by Jess_Lomas
What do you mean by medically recognised
I mean that multiple health professionals have told me I have autism, but like OP they couldn't diagnose me on the spot. I would have to sort that out myself. I've also done a lot of research and asked if there's anything else it could be. I've asked people who knew me when I was younger about it as well. So with all these factors included, I am medically recognised for my condition, but not diagnosed. As I said, I get the allowances I need based on other diagnoses so getting one for autism won't really serve me.
Original post by cherryblossomed
4. It's very likely that even if i were to try and get diagnosed, I would probably walk away without a diagnosis due to prejudice (research on ASD is only aimed at cis white males) and lack of research.
4. It's very likely that even if i were to try and get diagnosed, I would probably walk away without a diagnosis due to prejudice (research on ASD is only aimed at cis white males) and lack of research.
None of this is accurate, and I think we have to be careful about stating things which could mislead people
There's a variety of research on autism spectrum disorders, and it's aimed at the scientific community broadly, not any specific type of person
There's an abundance of research, and more will continue to be produced, as ongoing research matters for understanding
Original post by cherryblossomed
I mean that multiple health professionals have told me I have autism, but like OP they couldn't diagnose me on the spot. I would have to sort that out myself. I've also done a lot of research and asked if there's anything else it could be. I've asked people who knew me when I was younger about it as well. So with all these factors included, I am medically recognised for my condition, but not diagnosed. As I said, I get the allowances I need based on other diagnoses so getting one for autism won't really serve me.
Ah, that makes sense.
I would maybe try and refrain from saying medically recognised as that means that it is contained within your medical records so anyone who reads them will know.
Good that you are able to find some acceptance though what others have said
Also, I'm a 18F and have been diagnosed with autism through the NHS and yes it is more common for white male cis people to be diagnosed in the most recent criteria it talks about differences in girls and trans and non-white people so the system is getting better as there has been a lot more research done into it so if that was the one reason against the diagnosis then don't let it stop you
Also under the disability act it is illegal for employers to discriminate and have to have a percentage of employees that are disabled so sometimes it might even be a benefit
Original post by Jess_Lomas
Ah, that makes sense.
I would maybe try and refrain from saying medically recognised as that means that it is contained within your medical records so anyone who reads them will know.
Good that you are able to find some acceptance though what others have said
Also, I'm a 18F and have been diagnosed with autism through the NHS and yes it is more common for white male cis people to be diagnosed in the most recent criteria it talks about differences in girls and trans and non-white people so the system is getting better as there has been a lot more research done into it so if that was the one reason against the diagnosis then don't let it stop you
Also under the disability act it is illegal for employers to discriminate and have to have a percentage of employees that are disabled so sometimes it might even be a benefit
I would maybe try and refrain from saying medically recognised as that means that it is contained within your medical records so anyone who reads them will know.
Good that you are able to find some acceptance though what others have said
Also, I'm a 18F and have been diagnosed with autism through the NHS and yes it is more common for white male cis people to be diagnosed in the most recent criteria it talks about differences in girls and trans and non-white people so the system is getting better as there has been a lot more research done into it so if that was the one reason against the diagnosis then don't let it stop you
Also under the disability act it is illegal for employers to discriminate and have to have a percentage of employees that are disabled so sometimes it might even be a benefit
thanks for that.
just because it's illegal doesn't mean that it won't still be done. Although there's new research going into it, i really don't feel it would be wise to fight for a diagnosis since the access arrangements I need are covered by my anxiety diagnosis and the one for having a low processing speed. I feel like I'm repeating myself, but as a female POC I really don't need another thing for people to discriminate aginst me with. People will still continue to do it no matter what laws are in place. It's a cynical view of the world but I have to cover my own back, and since I'm lucky in that I don't need this diagnosis in order to get the support i need, i'm not going to force it. i'm just not interested in going back and forth with the NHS since I can't afford to go private. It's just not worth it for me personally.
