Understanding my autistic daughter

Hi,

My daughter is 18, recently diagnosed with ASD. That’s as much support as we have been given. The diagnosis and nothing more. 

She is on fluoxetine for anxiety and depression. Recently she feels her meds aren’t working as well as they used to. We only have the GP to go back to. 

She is very up and down, high and low. Today she has taken herself to bed. She’s snappy and not her usual self. It terrifies me. The ups and the downs. One minute a ‘normal’ whatever that is teenager. The next minute her mood is in her boots. I don’t know where to turn of how to help her. I return to work tomorrow after a long spell off to support her. But things don’t seem better. 

Any advice or support welcome

Thanks 

  • Concerning emotions some individuals on the Autism Spectrum work more like a light switch, on or off. Some can go from extremely anxious to extremely calm in literally less than two seconds. 

  • Anti depressants are not prescribe and forget medication they need to be kept under constant review. Sometimes people develop resistance or New side effects Over time. And at 18 your daughters brain is still going through fairly large changes. It’s entirely apropreat for her to go back to her gp and query whether these meds are still right for her.

  • Have you explored this website (NAS) for information that might help? (Apologies if you have, it just seems a good idea if not, as they have some great resources.)

    I am not an expert, so these are just ideas for additional support for you to explore. Seeing a psychiatrist - someone who is medically trained and would have specialist skills and experience - might be better than just a GP. Is that an option? At around her age I was on medication for depression and anxiety (however, I was not aware of being on the spectrum back then) and I was an outpatient at a local hospital where I could pop in to see a psychiatrist who could talk with me about how things were going and help navigate the medication, adjusting prescriptions and so on. As far as I understand it's normal / common for medication to need tweaking over time. But getting professional support with this is really important. GPs may have some ability to help, but I'm not sure how limited it would be - it might depend on the GP (some have a background of additional specialisms and qualifications).

    For superficial queries about managing things, some pharmacists are trained to offer consultations (all confidential). Yet, they wouldn't have access to her medical history (as far as I know) so this might be best just for simpler questions rather than deeper support. They may also be able to guide you to your local resources. I don't know what it's like where you are but one pharmacy near me offers same day consultations in a private consultation room.

    I loved Loz's holistic suggestions as well. I wasn't ready when I was 18 to understand and take on board holistic approaches (this was partly because my family weren't open to it, too, so I was most likely adopting their mindset), but now I'm much older, they are my lifeline and have given me tremendous support. I also love Buddhism, Taoism, yoga, reading about philosophies. Also, time in nature, etc. even if it's just sitting on a bench near a quiet lake or under a tree with few people around. One thing that did work wonders for me as a teen was time around animals and time to be alone to be creative. It's likely all these things will need to be led by your daughter, though, and her preferences and readiness.

    One more idea is to think about ways you could reduce stimulation around her environment and keep a sense of routine around her. When I was in my teens my parents were in the process of splitting up and the sounds around me (arguments, slamming doors) and changes in routine (a parent suddenly emotional, acting irrationally) were extremely difficult to handle, on top of pressures like A Level exams, plus my body changing, pressures in school. You won't be able to change everything (it's not humanly possible!), but there are some small things that could help: regular meal times, regular sleep routines, etc. Give her a heads up if something's about to change in a few days so she has time to think through it. Let her know a few extra details about it as well beforehand if she would like to hear.

    Sorry, a long message.

    Hope this helps, and I wish you all the best. 

  • If she's only recently diagnosed, it's possible that she's trying to come to grips with it. I'm not yet formally diagnosed but found out via a counsellor and even though it made so much sense, and I felt relief, I still went through a period of time, over the course of several months where I realised that I didn't actually know who I was. It was tough to look back at all the things I'd been through, and certainly the things I had to give up as a result of being undiagnosed.

    I also have anxiety and depression, I don't take medication now, but I have done in the past. Does she do anything else that could help her? Medication is often a useful tool to help level you out, but it shouldn't ever be the only course of action. There are a lot of other things that are more effective long term. If she doesn't already, than she needs to find the things that work for her. For me it's Buddhist philosophy, meditation, mindfulness. Exercise and diet also play a big part. I don't watch much tv and I try to limit my media usage in favour of doing physical things like sewing and miniatures. It took me years to figure out what worked for me so don't expect an over night transformation.

    Of course, on top of everything, there is the pandemic. It has affected more people in more ways than they realise. My counselling service who helps me is busier than they have ever been, people are getting very stressed, and more people are finding it difficult to cope. If NT people are struggling, people who already have challenges navigating daily situations are going to struggle even more.