Discovering you’re autistic: what next? | Divergent Voices hosted by Purple Ella

[Music] for autistic people recognizing or identifying your autism or receiving a formal autism diagnosis is a really big deal but the process of getting that diagnosis can be really arduous and timec consuming and there can be a lot of mistaken wrong diagnosis along the way so I just wanted to ask you to talk a little bit about what your experience was of realizing that you might be autistic and and going through that diagnostic process Emily I was 16 um when I found out that I'm autistic that

was kind of following Fair few years of very very high anxiety and OCD symptoms then that started affecting my mood a lot so I ended up in a psychiatric unit when I was 16 while I was there the question of me being a to autistic was raised and my parents had kind of started to wander a little bit cuz my cousin's autistic and my auntie had been kind of questioning it for a little while but then my doctor he said I don't think you're autistic I think you just have high social anxiety and this was

after he sat down with my parents to ask them about my childhood and they also completed what's called an seq social communication questionnaire which is often a screening tool autism and I scored four now I think the cut off is 15 or something 15 or 16 I think is the cut C off and then kind of T to whatever is kind of maybe but I was I scored four so I was really low on it um so yeah they didn't think I was autistic and I was still very unhappy and very distressed so I was fortunate enough that

my parents kind of paid for a private assessment and it was supported by my community cams team the lady said to me at the end she said I think there's one explanation for everything that you've been through and I think that's autism and the the moment she said that I just I felt so belied cuz it had kind of been years building up to that of just feeling so lost and confused and everything so that was kind of how I found out and I think sometimes it depends on the journey that they've been on d

epends on who they've been around what their kind of understanding is of it but for me it was definite relief um and I was I was quite I was quite grateful to the person that diagnosed me as well I receiv received my autism diagnosis significantly later than that I was 36 when I was diagnosed so I'd gone through the process of School University starting my career getting married having three children all completely unaware that I am autistic and that had been a really difficult Journey for me be

cause I'd had a lot of mental health problems I'd really struggled socially I'd struggled to start my career because of discrimination that I was experiencing because of the way that I was behaving without anyone having any knowledge of why I might be behaving that way on three separate occasions I was hospitalized because of my mental health issues and I was literally color coordinating their cupboards for them organizing their shelves and asking them if they could tell me specifically what was

happening at what time each day and still I had doctors literally saying to me we really can't work it out because you don't really fit a specific mental health criteria but there is definitely something going on with you in the end they diagnosed me with cyclopia which is like a Rapid Cycling version of bipolar disorder which I think they came to because I was having meltdowns and therefore was rra rapid L having mood changes at some point somebody also tried to give me a borderline personalit

y disorder diagnosis and I even like I fully explored these diagnoses I was like great give me the personality disorder questionnaire filled it out and they were like yeah you don't actually have a personality disorder so I tried every psychiatric medication going I tried many therapies and I was still really struggling and I did not know why and then in what is becoming quite a classic story I had a child who was diagnosed with autism out for the day with my child and I couldn't find find a par

king space and I had what I now recognize to be an overload experience and I honestly sat in the car looked at my child in the back of the car and went oh my God I'm autistic so no doctor identified this no one signposted me I literally realized it myself but then I went through a kind of like am I insane trying to like give myself labels or trying to grasp onto something else so I spoke to my husband and I spoke to my friends and honestly the general reaction amongst my social group was oh my g

osh did you not realize I waited a really long time for an NHS assessment because I didn't have the resources to go private so I waited for around 3 years and within 10 minutes of meeting me the doctor who assessed me said this is not going to be a tricky one and I was diagnosed in that appointment and that was incredibly validating initially I think we'll talk a little bit more later about how that kind of got processed over the next few years but it did feel like finally someone has figured ou

t this mystery that has kind of really left me age 36 really really struggling I cut off and work with people who are coming later to a diagnosis or coming from a complex what we call complex background and if I have someone sat in front of me that's got multiple labels already assigned then my alarm Bells go up my red flags go up and I go okay this we need to spend time here the first thing is you validate the person and hear them and listen and say okay if this is what you're feeling and exper

iencing let's explore that together and let's let's go through this in a an in-depth and proper way so I think that's the first thing and actually if in a sense the later someone is coming to diagnosis or to explore the idea of at diagnosis there's going to be a lot of baggage potentially trauma but a lot of strategies that have been put in place as well so you really need to give a lot of time and energy to exploring what their experience of life is what they've had to do in order to fit in and

get through life so a lot of it is listening I think unfortunately in a lot of assessment ments it's a lot of asking questions but actually we should as clinicians it's our job to really listen and listen and ask and ask more questions and listen again CU When I was asked about my special interest for example I explained that I was completely obsessed with dance I wanted to be in a musical and uh the doctor said well yeah but I mean that's quite normal and I explained that I spent every waking

hour thinking about dance and kind of went into the depth of that interest but if I had not been someone who able to advocate for myself and explain the depth of that interest I might have just gone oh yeah okay right and let that one slide So when you say interest that's a really good one that I will spend a lot more time probing about in an assessment so if a parent says well she's really into her Barbies she's really into her um sylvanian families it's that's what girls play with or doing her

makeup or doing her hair then sometimes someone that hasn't been thinking outside the box and doesn't have the clinical experience to think actually we need to probe a bit more about about this or doesn't have someone sat in front of them like Ella who's able to advocate for themselves that might get fully missed and again around relationships and friendships on the surface it might look like they've got lots of friends but when you go deeper there's something else going on it's not a straightf

orward and it's a lot more tricky for them to navigate so I think it's really important that being said that we consider the role of self-identification and self diagnosis in any video where we speak about autism diag nosis and I think because of that kind of bias and difficulty once you're in the assessment process because of the weight times because of the fact that some people just simply aren't able to access an Autism assessment we need to find a way to support the aspect of our community t

hat aren't able to receive the official stamp of your autistic if you like but are autistic and have recognized that in themselves Emily how do you feel about self-diagnosed autistic people and how we could kind of include them in our community I think that having a professional tell you such an important part of your identity isn't necessary you you know yourself and you know kind of your journey and what you've been through for people who are self- diagnosed kind of with autism or or kind of A

DHD or anything it's a lot of time goes into that and a lot of unpacking kind of themselves and Trauma and everything goes into that it's not just something that they randomly see a Tik video one day and go oh yeah I got ADHD it's a journey isn't it I just think who are we to tell other people kind of who they are and what neurotype they have so yeah self diagnosed autistic people are more than welcome in the community I just know that sometimes they don't always feel valid themselves and yeah I

wonder what we can do more about that people come to me because I talk about self diagnosis quite a lot and people come to me and say well what about people who are wrong as if figuring something out about yourself and supporting yourself in a way that makes you feel better could ever be wrong the burden of proof is not on the individual the burden of finding out who they are and how to feel good in the world that's what we need to be doing so anybody that's watching this video that is self-ide

ntified you are valid and we support that when I received my autism diagnosis I think I thought I'd be like I'm autistic great I'm with my life everything will be fine now and what actually happened was the start of a processing time that I'm still in now some seven years later do you feel like the act of processing your autism diagnosis has been a journey for you so my initial reaction was relief and I believed it processing what actually is autism and understanding what the diagnosis actually

means then comes the whole of you just thinking about your life and about What's led you to that point and with that comes a lot of things that you have to unpack a lot of trauma you think is that because I'm autistic is that because I've misinterpreted certain things is it my is it me that led to this kind of certain situations and that's hard to have to kind of unpack all of that especially when you start to share your diagnosis with other people or even just from people's perspectives beforeh

and so I had a lot of meltdowns every day in the unit because a lot of things were changed and routine was changed and the doctor wrote that Emily has hysteric attacks when she does not get her own way and that is a line that has really just stuck in my head from my notes because that's so often how autistic people especially autistic women are perceived is hysterical and I was called that growing up when I got upset and overly emotional by whatever had happened so being told kind of by professi

onal that actually my meltdowns were hysteric attacks when I did not get my own way which to clarify were when things changed routines changed you never knew what was happening so much was out of your control that I felt like I was being made out to be a selfish manipulative person and I don't think that was the first time throughout my life so once you kind of understand what autism actually is is and what it means for you and kind of how you are as an autistic person how you function then it's

okay well what about all these moments that's led up to this and that's hard that's really hard and I don't know if that Journey ends I don't know if it does I mean I'm kind of six years post diagnosis now and I know I've processed a lot in that time but I don't know if that hurt and sadness would always be there and obviously I was lucky to be diagnosed with 16 when I so many people aren't as you said yourself to much older so I try to be grateful that it only took 16 years but I then I think

about what about all the stuff that could have been maybe avoided I think one aspect of receiving that diagnosis is maybe recognizing where you are camouflaging or masking your autism and you might not have even been aware that you were doing that ahead of either identifying or being diagnosed as autistic and then you learn about masking and you kind of go oh am I doing that and I think when I was first diagnosed I genuinely thought that my goal was to mask more effectively like now I know I'm a

utistic I know where I'm going to get it wrong and there what I need to do better and so for quite a while I was just trying even harder to overcome the autistic traits that I had and then there was a period of time of being like no actually what I need to do is love myself as I am and be valid as an autistic human so I just need to unmask and now where I'm at is I don't know what the heck unmasking means I don't know when I'm masking when it's safe to unmask and who I even am at all which is qu

ite a realization in your 40s and one of the things that I found really helpful once I've reached the point of I don't know how to unmask or who I even am is looking at both books that have been written specifically by autistic authors about unmasking contain like helpful exercises that I've been able to do to figure out when I'm masking why I'm masking and what impact that's having on me but also reading books by other autistic people talking about their lives and the times that they've mask to

relate to the experiences that they've had are there any resources Hannah that you have come across that you would recommend as great sort of tools for people newly diagnosed being like what does this mean for me now to access and use absolutely so I'm a strong believer in post diagnostic support I'll offer what I call Psycho education so it's not therapy because I'm not a trained therapist but it's a very practical supportive environment and a space where we look at what being neurod Divergent

means to them because it is different for everybody so we'll explore the aspects that might commonly affect people does it affect them what their interests are what do does overload look like triggers but also particularly for older people that I've worked with it is I think like Emily was saying it's that unpicking of History because actually what can come afterwards can be depression anxiety anger which is a very very valuable emotion to have because you're thinking why did no one pick this u

p and if it had been picked up my life could have been really different so that is a really important process to go through so I think it is important that we share with people that yes it can be a Eureka moment I have a variety of responses when I do feedback or when we come to a decision of a diagnosis often it's quite emotional it can be anger it can be disbelief you know had to learn that actually it's a very complicated journey and it's not always that straightforward and that simple and th

at brilliant we do sit and sometimes unpick things and have to go through the process of grieving as well for what didn't happen for them and it should have happened sometimes when people find out they're autistic they can then be accused of Behaving more autistically right um and I think that's partly because people are given permission to be themselves is partly because people recognize that if they don't behave more autistically they are going to burn out do you feel like you became more auti

stic when you were diagnosed Emily I don't think immediately and I don't think it was a conscious thing but my dad said to me you seem more autistic now than ever seemed before um and he wasn't saying it in a bad way or anything he was just making an observation we've spoken about it and I think that I just reached a point where masking was just too much and actually because I knew I was autistic I was able to try to start to unmask and I've learned from everyone else around me all of my reactio

ns all of how I do things I've copied other people is I I thought everyone did that so to learn that no actually some people do just have an instinct of how to react in social situations without copying what they saw someone do on TV last week learning that not everyone did that I learned that from someone else made me question well then who am I and what is me and what's not what's other people and what's masking I don't really know how I did it it was more just giving myself self permission an

d because I knew and my family knew and everything at some point I guess I was able to kind of react more authentically as how I just wanted to act and not how I thought was right because being a massive perfectionist and and actually I have OCD as well and I've often get really panicked about not doing things right needing to do it right because I'm autistic but because if I don't do it right something else might happen and it's a whole load of anxiety so giving myself permission to not have to

react correctly in situations especially if you're with people who know you and that was the first step to being able to unmask a little bit but yeah my my family say it mostly I think now but not so much other people just my parents say yeah you seem more artistic these days but it's not they're not saying it badly which I think often it is said badly it's said kind of yeah you're putting it on because now you think you're autistic and now you're putting it on but I was lucky not to kind of ex

perience that often when people are first diagnosed they can ALS also realize that they're like on the brink of burnout or especially for those of us that are diagnosed late and have been maybe masking heavily for a really long time you can reach a point where you're diagnosed and you suddenly realize that being this exhausted and this unable to cope with stress has a name and it's autistic burnout and it's almost inevitable that you'll be experiencing it having struggled on for so long and so I

think there's this like period of time of being diagnosed where you can take the time within the amount of space and time and capacity that you've got to think about whether you want to ear mask to think about how you might want to change your life and possibly also to give yourself some self-care and rest to recover from the effects of being an undiagnosed autistic person for whether that's 16 years or 36 years because you're probably going to need that if you found this video helpful please l

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