Coping with my emotions as a parent of a late diagnosed daughter.

Have been on multitudes of threads. In conversation with at least 100 autistics. 98% have had negative and some long-lasting terrible side effects to anti-depressants. Our entire biology is different and these operate different. There's a community of medical researchers and several threads on how autistics should have access to Anti-Anxiety medication instead of anti-depressants.

Few of us suffer from actual depression, we often don't have the vocabulary to express how we feel or how we're trying to cope with the negativity around us or the sensory assault. The words which often come up are: a lack of clarity, misunderstood, intensely impacted, frustrated or confused. 

As a helpful suggestion, it could be beneficial to have her GABA levels checked. 

That's very helpful  as she is on 5th anti depressant and not entirely sure the latest is really that helpful either! GP appointment in a couple of weeks. Hope to find out when ADHD assessment can begin soon. Thanks

Gosh May! If you work in mental health support, you must know your onions! My daughter did 3 rounds of CBT (really all that was on offer) which was absolute torture for her. I also appreciate that supporting your own daughter is a different level of challenge. 

Your description of your lovely daughter (so much pride coming through from you) is like looking at my own daughter. So far, she has found the psychotherapy the most beneficial especially in processing her trauma. Sue 

Thanks for your lovely and quick  reply. One thing I do my best to keep in mind is self care as I have worked in mental health support. My daughter has always struggled with feeling overwhelmed.She was diagnosed with anxiety and depression and although I could help her so far, I always felt there was more going on and so did she. A psychiatrist,  glibly, we feel said borderline personality disorder...and advised she went out more and got on with life!  which sent my daughter into a complete spin and she googled like crazy, and I was sure it was not correct diagnosis. She was given a 6 week one hour a week course of CBT. I and many others feel BPD or EUPD is a contentious and extremely unhelpful diagnosis. She now has an excellent private psychotherapist . She had 'help' from CAHMS since she began severely pulling her hair out aged 12 and still does. She has been diagnosed moderately dyslexic at aged 8 years, she has social anxiety  and has had disordered eating. The possibility of autism and ADHD was raised by ourselves in 2021 and a supportive GP referred, but we had an 18 month wait. We are relieved to have a diagnosis and there was great support during assessment. She will attend a support group through them  The centre also will assess ADHD and part fund appointments regarding hair pulling (trichotillomania). It's early days. She started an art degree but only managed one term. She desperately wants to work and 'fit in' but fears 'burn out'. Like your daughter she masks and is confident and lively.   I too hope she finds an environment to thrive in. We have no other family so I feel incredibly responsible.  If you've got this far , thanks so much.

Your comments on feelings all resonate and I find setting boundaries which I now try make very clear is difficult and even feels cruel  .. but I get exhausted as her most common time to talk , and for hours, is late at  night. I work 24 hours at moment. If I make plans I often cancel as she needs me. It's easy to feel resentful.

She says she doesn't want to be a burden and I don't want her to feel she is. We have a close relationship and she says we get on most of the time ... that's good enough for me! I am optimistic person so I feel the relationship will be deeper as more understanding develops. She has so much to give, so empathetic, creative and loves to have fun, I really want her to have a happy fulfilling life. I am pleased to have found this group and will continue to look for  and give support. Felt good to share.Thanks. May.

Hello again, I hope this is helpful. I recently paid for my daughter to have a DNA test to discover how her body processes different mental health medications. The results explained why she had never responded to antidepressants/ anti anxiety medication. She has just tested yet another medication for ADHD which has severely exacerbated her Autism. Our next appointment with her psychiatrist is to explore non-medicated ways of managing her ADHD.

You may already be aware that Autism and ADHD compete against each other. Just thought I would let you know that you may find it a rather meandering, at times frustrating journey discovering the right treatment and strategies for your daughter. Fingers crossed that the process for your daughter is more straightforward, Sue

Thank you so much for your acknowledgement. It is difficult to express these feelings when you and others around you are always focused on your daughter's needs. As I said in a later post, I am going to make some enquiries about getting some support myself. 

You have  probably noticed that there are a number of comments about parent relationships. All I would say is that you can only do your best and part of that is looking after yourself, too.

It might help you to know that my daughter has said that she would not change her diagnosis and is starting to recognise the talents this gives her. It is a long journey for us both but I have hope that she can find an environment where she can flourish and have a happy and fulfilled life. 

In terms of my relationship with my daughter, we both feel that because of the nature of the conversations we have had, our bond is much deeper. 

Hello Sue @NAS85436 I could have written it myself. My daughter aged 23 recently diagnosed ASD and awaiting assessment for ADHD. Thank you for your post. I don't feel so alone with my feelings. 

Hello Ann, 

My daughter has said to me that she worries that she is too much and doesn't want to drain everyone who cares about her. We have started to set some boundaries and I am getting better at recognising when I can postpone a conversation and when she really does need to talk until 2.00am. 

I have told my daughter that I see her as a strong and brave woman who does not see what she gives back to others. The reason we continue to invest in her is because we love her deeply. Neurodiversity brings with it some incredible positive aptitudes. I am looking forward to her finding a place where these are really celebrated. 

Only, yesterday, we had a chat about me getting some 121 support. As the saying goes "if you want to help others; you have to look after yourself first". 

Thank you

Hi- I am 25 and was diagnosed a few month ago as autistic. I’ve struggled with repeated burnouts and anxiety, depression, issues with food (ARFID) for a while now- I also wish I had been diagnosed sooner. 
I hope you can let go of the guilt because there is no reason to be. I am sure that you are a very supportive mum and that probably gave your daughter a lot of stability growing up- that’s what it was like for me actually, except that sadly as we grow older even mum superpowers can’t sort out all our issues. 
My mum also knew I was different from a young age and like you she tried to make me see different as something positive - it worked for a while but with school and growing up I became more aware of just how ´different’ I was and it became harder. 

I can relate to feeling frustrated at the system and professionals. I still struggle to understand how despite seeing so many professionals over years , noone noticed... I was even inpatient for 8 weeks (and really struggled as I felt so ‘different’) and noone picked up on me being autistic. In the end it was my dietitian who suspected that I might be autistic and that resulted in me seeking out diagnosis. What helped me is that I actually contacted some of the professionals I saw over the years to tell them about my diagnosis- I didn’t want to point the finger at anyone / but I realised that the issue most likely is lack of understanding and training about autism and never getting feedback ie. if they never get told I am autistic how will they ever know they missed something when they saw me... I sent some emails and made a few phone calls. I got only one responsend none from the others. Not sure it made any difference but it made me feel better.

Also I just want to say that it’s important to also take care of yourself- you mention your daughter always being centre stage - i can relate as while struggling over the years i have put a lot of pressure on my mum and I am still very reliant on her for emotional and practical support. I feel bad about all the anxiety and stress I am generating. I just feel that it is very important you also protect yourself when necessary- I am glad when my mum does this for herself sometimes- i can get so caught up in my worries and the stress that i can find it hard to not spread it to mum.

Thank you. Interesting what you say about humour......we have started to have fun. My daughter clearly relishes pointing out my autistic traits and saying "see......your fault I'm a weirdo". We also have a short hand of "hoiw many spoons do you have today"......meaning level of energy/ motivation. Sue

These all seem normal. I didn’t know my son was dyslexic until Uni but it changed everything for everyone. I didn’t know I was autistic! 

Awareness and commitment to helping however you can will probably strengthen her trust and respect for you. Channel these emotions into what you can do. There is a saying, “Love covers a multitude of sins.”  Love here, is practical, it is a thing in action. And the past hurt and frustrations from the complexity and chaos around us can be easily moved on from by just experiencing being seen and aided. It’s better, really, when those we are the closest to are the ones growing and walking through life with us. Openness is one of the best attributes of “human beings”.

Please don't be sad or guilty.  If you were and are an emotionally available Mum to her and she can talk to you then you are a great Mum!  I'm a suspected autistic mum to two adult daughters on the spectrum (ASD  & ADHD).  We never feel frustrated or disappointed about these diagnoses, we use humour and complete honesty and openness to navigate our way around the world and each other.    You can still retire and your daughter can still be independent when she is well supported in her particular needs.  

Thank you for the signposting Peter - I will deinfitley check this out, Sue

Take a look at Pinpoint Cambridgeshire and especially their Friday Morning Tii Coffe hub  chat on Zoom. See https://www.pinpoint-cambs.org.uk/pinpoint-events/  It is supposed to be for just Cambridgeshire but any will be welcome. It is a charity run by volunteers who have been there. 

I'm not a parent of an autistic child, but I'm pretty sure that my Mum experiences at least the first three things on this list.