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I’m pretty sure I’m autistic but I’m scared help

NAS71391

Hi! I’m  19 and I basically struggled all my life with multiple things, specially the difficulty in creating and maintaining relationships. I always felt like I was broken. I thought I was borderline, bipolar and even a sociopath at some point because I barely have any empathy, which honestly kind of sucks. I got really, really depressed, got eating disorders and a couple of other things until finally, one day a found a youtube video talking about autism in girls and it finally clicked. I had everything the woman on the video was telling me about and I just started crying, it all made so much sense. I did a lot of research, focusing on autistic woman. The more I looked into it the more convinced I was. The fact that woman are usually diagnosed later, masking, special interests, stimming and literally every tiny thing I found out about it was fitting in more and more with me and all the struggled that I have. 

Yet, the minute I got out of my little research utopia, I started noticing how the world doesn’t see it like that. My sister is a psychologist and I started noticing she constantly talks about how too many people are misdiagnosed with autism just so they can put them on meds and that a lot of them aren’t “autistic enough” or “don’t even look autistic, therefore they aren’t” and that made me really, really scared. I’ve been looking into getting a diagnosis but I’m terrified that the therapist will say I’m making everything up, even though I struggled so much with this my whole life. I’m scared they’ll say I’m “not autistic enough” ,mainly because I’ve been heavily relying on masking for a really long time, and send me away. If that happens I don’t think I’ll ever have the courage to talk to a therapist again. Do any of you have some kind of advice? Please I’m desperate.

Thank you so much

  • Your sister is one psychologist of many. What does autism look like? There are good therapists out there. As far as I know, therapists don't diagnose. It has to be a specialist clinician.

    If you don't do anything about it now, there may come a point when you're older and you find it difficult to cope. I'm 35 and speaking from experience. 

    If you did something about it now, you would know what you're working with. This would then inform any future therapies you have. 

  • Hello

    My 17 year old-daughter has just been diagnosed with autism. This was difficult to achieve because she is female and had devised coping strategies to cover up her traits. It was her anxiety and OCD that the medical profession concentrated on. They did not take a holistic overview to see why she had developed these mental health issues. Once diagnosed there was no automatic help/support/therapy or the offer of any medication even though she had self-harmed. Autism does not have 'a look'. It is a neurological difference. You know yourself best. You have been doing your research, which is what I did to help my daughter. Please seek the help that you need. You are the one that has to live inside your skin for your entire life, not your sister. I want to write more here but will refrain as it will not be helpful to you. Basically I want to offer you my support. Please speak to your GP first to see if they will refer you for an assessment. You could write a timeline/diary of your symptoms/traits/struggles. i did this for my daughter and was able to present it to support her case. If it is any help to you I was also nervous as I had to work out that she was autistic. I knew that there was something 'bigger' underlying her anxiety, OCD and self-harm. I first of all pursued an assessment for Tourette Syndrome because she had what I though was a 'tic', it is actually a 'compulsion'. The clinicians were fantastic, supportive and kind. They didn't say that I was foolish for pursuing an assessment for something that she didn't have. They gave her the formal diagnosis of anxiety and OCD and told me that they thought that she might have autism. They did not diagnose this, giving me the option to pursue through a focussed assessment. Good luck. 

  • With respect to your sister, just being a psychologist doesn't make her an expert in Autism. My brother is a scientist but that doesn't mean he is an expert in every field of science. Only in the one he studies. I have two cousins, neither 'looks' Autistic and yet they were diagnosed as children. And finally, Autism doesn't automatically mean you require meds. So her view of Autism appears limited, despite her field of study.

    I was fortunate in that whilst I am as yet, undiagnosed, it was my Counsellor who spotted the signs. She had experience with Autistic children so when assisting me (at 38-39 years old) with my PTSD treatment, she noticed similarities that no one else, not even I had noticed. Since the time she referred me, I've been trying to understand it.

    The only people remotely qualified in giving you a formal diagnosis are the people trained to identify it. Even that isn't fool proof but you shouldn't accept anyone, professional included you dismisses it out of hand without taking it into consideration. It's why so many, woman particularly, have been missed and why so many of us are being diagnosed in later life.

    You also shouldn't let the lack of diagnosis stop you from using the techniques created by and for autistic people that could benefit you in living your life to the best of your ability. It's the one regret I have with not knowing earlier as I gave up a career I loved because I didn't understand why I couldn't cope and ended up developing Depression and Anxiety disorder as a result. 

    People often bring their own bias with them even if they don't realise it. I had a problem with my foot, sat down with a doctor who told me, without even looking, I just needed to lose weight and it would be fine. I felt absolutely dejected by that as deep inside, I knew there was more going on. It took two years and constant use of painkillers, before I finally got to a specialist who told me the tendon in my foot had come away from the bone. I had surgery to reconstruct my foot, and reattach the tendon. I had three month recovery and still have issues now.

    I know it seems scary. If it helps, I'm scared to get to my referral and find they say it's not Autism. It would feel like starting from scratch again. But don't use it as a reason not to try. Your stronger than you think you are.  

  • ok i am tim i am 61 and i know just how you feel i have spent my whole life seeing theropists ect untill i finily found out what was wrong i cant tell you any thing really except that there is nothing wrong with you its most other people