Should I pursue diagnosis?

[Changingnameagain]

Hi- I hope this is ok to post here.

This year my DH and I agreed we should request our GP refer our 5yo DD for assessment for ASD. Following a phone appointment with me the GP agreed it was worth pursuing and we completed forms etc. The wait is incredibly long in our area and our DD is unlikely to get an initial assessment before the 1 year mark
Our main reason for wanting to pursue an assessment for her is to try and better understand her and parent her better. We have been struggling this year with some of her behaviours and understanding why they are happening.

So, this aside, I have long suspected I may be ND. I know everyone sits somewhere on a spectrum (I'm a teacher although not in a special school- so have had some training input on some neurodoversity and how best to work with students with those neuro diversities in classroom) however I do feel whatever I may have (sorry for poor phrasing) does impact my day to day life.to some degree and the parenting of a second child has definitely begun to compound some of the things I've always struggled with.

I was diagnosed with Generalised anxiety disorder in my mid twenties- I had originally sought CBT for disordered eating (specifically binge eating- I also suffered with bulimia in my mid to late teens). The therapist said though she felt all of these food issues were actually symptomatic of my anxiety. I would say I can get quite high social anxiety with unfamiliar people and also going to unfamiliar places. I get bad travel anxiety when having to use public transport particularly. I am aware that some ND people will experience high levels of anxiety around different things. I am wondering whether there is any point pursuing an assessment for myself to see if I am autistic. I recently read that in some countries- USA being one I think- that where a child is assessed as being autistic or having ADHD, they know are recommending the parents are also screened. So I am wondering if there is a likelihood I could also be ND.

I'm wondering if anyone else has been in a similar position and what you did- did you pursue the assessment for yourself, pros/cons of doing so. And any advice for how to pursue it for myself if I did choose to do so.

Thanks in advance to anyone willing to share their experiences with me.

I didn’t get a diagnosis till I was an adult. Having a diagnosis has helped but not in dramatic ways. Just small ways. I wonder if I had a diagnosis as a child I might have got more specialised help. The good things about having a diagnosis are I think 99% people are more understanding when I tell them and give me a bit more leeway, and also it’s a lot easier to find helpful information now that I know what I’m looking for.

Yes helpful.
Compile a list.
Anxiety travelling may be sensory overload/ social or routine based causes.
Three areas to list:.
Sensory,
Social/ communication
Routine

Apologies communication is a bit shit as I am meltdowny at present.

<Breathe>

Yes, get assessed. It made the world of difference to me. Just an aside though, not everyone is a bit on the spectrum, you either are or you're not. Good luck.

Thank you everyone for your replies. Really appreciate you taking the time to share your thoughts.

I like the idea of a list @BlackeyedSusan - hope you're feeling better now. I will sit and have a think later. I definitely think I have sensory sensitivities around noise and light particularly. I can't tolerate very loud noise and find it hard to think straight and clearly- often feel like I lose my rag with my kids when they're being loud - shouting, playing, singing very loudly etc. I also dont tolerate fluorescent strip lighting well- can make me feel very sick. I remember as a primary aged child always feeling really ill and stressed by the lighting in Woolworths. I also like smooth texture a lot- to the extent I incessantly pick at scabs or calluses (even now as an adult) to remove the rough scab or skin so it feels smooth again. Even if this causes me pain or to bleed.
Sorry have ended up listing a bit on this post without meaning to.

Did you speak to your GPs to ask to be assessed?

@Mabelface thank you for clearing up my misunderstanding of the spectrum aspect of ASD. I didn't know you were either on it or not. I think that I was misinformed by some poor ASD training at work 10 years ago on that front.

Training has moved on massively, albeit still not perfect! If you're anything like me, you'll research, research, research to gain an understanding of yourself.

I’m in a similar situation. 5yo referred for ASD after starting school, which made me suspect I might have it too. The teacher kept saying “X does this and it isn’t normal” and I kept saying “Rubbish, I do that myself!”

I went to my GP and was referred, I was initially told the waiting time was 18 months. So after 18 months I queried why I hadn’t received an appointment, only to be told the waiting list had increased to 4 years! I said “but I must be near the top of the list?” and they said “no because you keep being leapfrogged by people who are in higher need of a diagnosis, we estimate you’ll be waiting another 2-3 years, possibly longer if you keep being leapfrogged”.

So I asked my GP to use Right to Choose to change my referral to Psychiatry UK. They assess over Zoom which isn’t ideal but better than waiting another 2-3 years. I should get a diagnosis by the end of this year.

DC is still waiting on the children’s waiting list, we have been told it could be another five years! So I’m currently trying to find out if there’s another route to get a faster assessment for children through Right to Choose.