Psychiatrist suggested autism before I did

[JaggedLittleKrill]

I had an appointment with a perinatal psychiatrist today about my PND. This is my second appointment with her. Towards the end she very tactfully and carefully asked if I'd ever considered that I may be "on the autistic spectrum" (her words) and that she thought I may be from the first time she met me. I said that actually, yes, I have wondered (more about ADHD really but also being ND in general somehow). She asked my permission to make a referral for an autism assessment and I said I would be so, so grateful if she would.

I'm now feeling very emotional about it. I'm thinking back over my life (I am in my 40s) and I just want to cuddle little childhood me. I also wish I could talk to the family members who I'm most like (and suspect are autistic, too) but they are all dead (parents generation, autism never mentioned or looked into). I would one hundred percent welcome a diagnosis but I'm scared of getting the assessment "wrong" and not being "different" enough. Does this make sense? I'm also scared for my daughter who is starting school soon because I can see so much of myself in her and I had a horrendous time at school apart from academically doing very well. I don't want her to struggle. I don't want this struggle for her.

Sorry for long post. This is so new and scary but also I feel a lightness at being "seen" like this by the psychiatrist for the first time (have been under various MH services since a teen). I am so conflicted.

Can anyone shed any light on what I may be able to expect from an autism assessment? I've read they like to speak to your parents but my remaining one won't want to be involved in it as there's no way they'll believe I could be autistic (very old fashioned views on such things) and it would upset them a lot anyway.

Thanks for reading if you were able to get this far!

I can’t write a long post as I’m too tired right now but I just wanted to let you know what you are feeling is normal - to feel conflicted, etc. Sending you a hug and hopefully others (who are less tired right now!) will be along with some good advice x

Thank you so much! Hope you get a good rest x

Think of it this way though, you are the very best parent for your daughter. You absolutely understand her. It must've been incredibly emotional having someone validate what you'd been feeling. 💐

diagnosed in my 30s. I’d always known I was “different” but used to beat myself up for not being “normal”. I was referred on the NHS and had a long wait. Like yforwankylol says, it’s normal to flip flop about your feelings between “There’s no way I’ll be diagnosed” to “I absolutely must be neuro-diverse!”.

I was assessed using the DISCO assessment so you talk about yourself - your childhood, your current issues and they also observe your behaviour as you speak. I didn’t have any input from my parents. My Mum had passed away. My Dad is lovely but he worked long hours and my Mum did a lot of the child rearing stuff, I’m not sure how much he would really remember! So since I’m pretty communicative my assessor took it from my own history.

I would honestly say for me it’s been life changing. Suddenly I understand who I am, why I am like I am. I gradually stopped putting pressure on myself to be like others and started planning in rest time after I’ve worked or socialised, asking for help at work or when I’m out and travelling…so for me it was absolutely worth getting diagnosed. It’s made a huge difference to my self-esteem.

I have a DD who is 9. She’s just been referred for assessment. While I wish she didn’t have the same difficulties I do, at least I understand her..she tells me I’m a great Mum because I get her! My hope is that I’ll have educational support in place by the time she gets to senior school.

That should have started “I was”, I had to copy and paste my post because MN went down when I tried to post it.

I had all of these feelings when it came to my child’s diagnosis. I think perhaps the most important thing to understand is that you will still be the same person regardless of outcome; a label won’t change who you are but it will give you (and others) a new lens through which to view and understand you.

I get the anxiety about not meeting the criteria but if it’s decided that the label ‘autistic’ doesn’t apply that doesn’t diminish/erase what struggles you have had along the way. Whatever the outcome you’re still the same person.

I hope the process helps you to find peace and acceptance.

Reading and re-reading every single reply, with tears in my eyes (and on my cheeks...). I am so thankful to you and for you all.

It's definitely about self-acceptance for me. And if I can have any reasonable adjustments at work & in other situations that I struggle with. Also, might help with my daughter too. I dunno, I'll have to try to stop thinking about it (said no one ND, ever - joke!) otherwise I'll convince myself one way or the other and not be able to deal with the actual answer (rigid thinking, me?! Never ).

I was diagnosed in January of last year, and it's been life changing for me. As @ItsMutinyontheBunty said, I have a much better understanding of myself, my behaviours, and the relief that has brought is huge. My diagnosis removed a lot of the pressure I was putting on myself to be 'normal' and has allowed me to be a lot more accepting of how I am.

I was referred back in early 2019 by a mental health nurse, who was helping me to come to terms with several health conditions that have left me disabled and greatly impacted my life. Like your psychiatrist did with you, he asked me at the end of an appointment whether I'd ever considered that I might be on the spectrum. The wait time for an assessment was already long, but then Covid came along and it took even longer.

I was sent forms out a couple of weeks after he made the referral - one for me to fill in, another for a parent or family member who had known me since childhood to complete. After sending those back, I was offered an online video-link assessment in December of 2020, which was with an OT and a Speech & Language Therapist. Following on from that, it was recommended that I attend a diagnostic appointment. This was with the same two professionals, and it lasted for three hours with breaks. They spoke to my mum on the phone prior to my appointment to gather whatever further information they felt they needed about my childhood. The appt was a mixture of questions and tasks. At the end of the appt, I was asked to stay online and wait whilst they went to discuss their notes with one another. They then came back and told me I have an Autistic Spectrum Condition. (They told me that they prefer to call it a condition as opposed to a disorder, because the wording is more positive).

Other than the obvious relief of having a diagnosis, the aftercare I received was absolutely brilliant. They offered a Post Diagnostic Education Programme (again, online with a small group of other newly diagnosed ASC people). It was a 7 week course, all about living with autism, communication, relationships, sensory processing, etc, and I found it extremely helpful. I was also referred to an Occupational Therapist, who spent several hour-long sessions (again video-link due to covid), and she was able to help me with strategies for managing my sensory issues, how to manage day-to-day issues, and tied them in with my other health conditions.

I got a full written report from both the diagnostic appointment, and from the OT, along with a 'To whom it may concern' letter confirming my ASC diagnosis, and explaining a little about the difficulties that can bring with communcation, interaction, sensory issues, etc.

I realise I've typed a lot here, but I hope that you find some of it helpful. All the best with your assessment when it comes around.

Oh @Swizzel thank you for that detailed reply! That's so helpful. I'm anxious about them wanting to speak to my mum. She would almost certainly be dismissive of how I remember things & say I was fine. Every day I felt like my insides were made of jelly. She'd see it as a criticism of her/their parenting. An extended family member was diagnosed and she spoke about it in hushed tones.

Other than that, I'm dreading the wait. It took 2 years for my friend in a neighbouring borough and i know it can be longer elsewhere.

@JaggedLittleKrill My mum is exactly the same - I actually gave the parent/family member form to my dad to fill in (parents are divorced), as I knew he wouldn't be judgemental. I was asked for my permission for them to speak to my mum, which I gave not knowing whether she would engage with them. I don't know much about what my mum was asked during the assessors' phone call with her, but I know they spoke about my childhood - development, behaviour, friendships, etc, because some of that information is in my diagnosis report.

My mum will not speak with me about autism, she shuts down if I mention the word. As with your mum, I think she sees it as a criticism of her parenting. I did learn, post-diagnosis, that girls are far more likely than boys to mask their autism features from a very young age, seems somehow we understand we are different and learn to copy others to cover it up! It's hurtful that my mum won't accept or discuss my autism, because it feels as though she is denying a part of me that I am happy to finally be able to wholeheartedly embrace. Please don't let fear of what your mum will think hold you back from carrying on down the assessment pathway, you don't have to involve her if you don't want to.

There's some great reading material out there if you want to explore and understand more about ASC whilst you wait for your appointment to come through. I'd be happy to send you a copy of the list the diagnostic team sent to me if you would like it.

It’s good that you’ve been referred. Unfortunately what you can expect is a 2 year wait with zero support in the meantime, and zero support after diagnosis. It does answer some questions about your life but that’s all, you won’t actually get any help.

I was amazed to see how much support one poster got post-diagnosis. I got a copy of my report and a bit of paper to one local support group, whose website I found impossible to navigate. Fortunately I have additional informal support from a group of ND women I found via MN and two friends who have both been diagnosed since.

Quite - we got a diagnosis for a child, then aged 5, and were just sent on our merry way. No support. No follow up. He now has a therapist which we self fund. So I find it amazing that so much support is available. I expect it’s a postcode lottery thing

@Swizzel please! Thank you!

I'm so sorry and angry that people are not getting the support they should! A long, long wait is one thing, but to then be sent on your way alone is another. I don't know what I'd need afterwards, whichever way the assessment goes, but for me I think it's down to self acceptance, which I know by definition has to come from me rather than a piece of paper, but that's how I am. I'm told by friends that there is some post diagnostic support in my area but I know to not rely on what "should" be in place and to have low/no expectations. I know work would provide reasonable adjustments if needed but that's about it.

My mum filled out a questionnaire for mine- I didn't tell her what it was for!

@felulageller smart!

@JaggedLittleKrill - here are a few of the books from the list that I was talking about.

Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World. Author: Sharon Heller

Odd Girl Out: An Autistic Woman in a Neurotypical World. Author: Laura James

Sensory Issues for Adults with Autism Spectrum Disorder. Author: Diarmuid Heffernan

The actual list of books I was sent is four A4 pages long, and far too much for me to type out, so I've cherry picked a few to start with. If you do want more, I'll happily scan the pages and message them to you.

There's also the National Autistic Society website, which I have found contains an abundance of really useful information: www.autism.org.uk

Thank you so much @Swizzel

@JaggedLittleKrill I forgot to add one book that wasn't on my suggested reading list, but which I found whilst browsing Amazon for the ones that were on it. I bought it based on the reviews, and when reading it found so much of myself in the pages that it was comforting. I frequently pick it up to re-read parts of it that resonate with me.

@Swizzel sorry, which boom do you mean (I am very tired, sorry!).

*book!

@JaggedLittleKrill It's not you, it's me - I forgot to include the actual book title! It's called Spectrum Women: Walking to the Beat of Autism

@Swizzel haha, thank you! X

Just a small update as I'm incredibly frustrated: there is no update! The psychiatrist had said she's made the referral but the place that does the assessments says she hasn't. I've rung both, weekly, and we're at a stalemate. Lots of other things happening in my life at present (very close bereavements and things) but I'm fixated on this. I can't stand it. People messing me round with appointments and stuff is a massive trigger for me, whether I'm ND or not. Just wanted a rant, sorry, all.