When you feel you have no clue

[Doowop]

I have an 11 year old daughter, she is undiagnosed at the moment but I have suspected autism since she was 2 years old, we were fobbed off by the family GP when I approached him on a number of occasions and a school counsellor �forgot� to refer us when she agreed something was wrong, we finally got put on the 85 week waiting list to see the nuero development team and we should get there at the end of sept.

She is starting to open up more and tell us why something so simple as choosing her own clothes seems to end up in all out war.

She already knows what she wants to wear when we�re going out but asks me what she should wear, she wants to wear what I pick as apparently it makes her feel close to me but she also wants to wear what she had in mind! We have just spent 45 minutes choosing a t shirt and shorts and i�m left feeling bad as my patience cracked.

I have just had 2 weeks off work with stress and depression, the fact that everything we do seems to end in an argument is destroying our family.

She won�t choose anything for herself, she won�t do anything on her own and she doesn�t go anywhere away from us that gives us a break.

I have no idea what i�m doing and I feel that i�m failing her

[MillyMoo]

You're not failing her, not at All! My little girl has spd and undiagnosed asd - it's a learning curve that's for sure! Clothes are a nightmare her due to spd, so her wardrobe is very very limited! I let her get on with it now but there has certainly been some outfits! 😂 what if she picked out some clothes that she wants to wear and you choose from those - so it's the other way round if you like?

Sending you a huge hug, it can be tough at times xxx

[Doowop]

She�d picked her shorts this morning so I got out all the t shirts that would go with them, none of them were right so I said we�d pick different shorts so got those out instead.

Going to keep to less choices I think x

[MillyMoo]

I gave up on what goes with things and what doesn't, it's made life so much easier! She's happy and we get to leave the house!

[Doowop]

The school are good with her while she�s there but haven�t offered any kind of help. We�ve funded a couple of courses ourselves and read various books - just at the point where it�s happening it�s easy to forget what you�ve learnt.

Now there�s this new need to always please me, she has her own ideas but pleasing me is more important apparently, then she has the issue of pleasing me v doing what she wants.

We�ve tried just asking her what she wants to wear but she won�t tell us until we tell her what we think!

[pinkspideruk]

its usually a bit more difficult to get a girl diagnosed with ASD/Autism as they are much better at copying the 'normal' behaviour of other people around them, the majority of the testing criteria is based on boys who display different behaviours and they tend to slip through the cracks although this is getting better and I know a lot of female adults who have been given a diagnosis now.

Have you considered a visual dressing doll? with photos of her clothes - she can put the outfit on the visual doll rather than talking to you about it. Might also help if you limited her options a bit so she has the choice of 3 items to pick out to wear rather than her whole wardrobe.

I would push for the diagnosis as at 11 she maybe doing okay but as she goes through high school getting a support system in place will help both her and yourselves.

I'm not sure where you are based but you could seek a private diagnosis if that's an option, or to see a private paediatrician who can then refer to necessary services so you arent waiting

You can also complain which sounds harsh but speaking as someone who used to work in childrens OT people who complained were generally seen sooner than those who didnt -it's not fair but with so many services under pressure it was often a case of putting out fires rather than preventing them! If you were to go down that route the key things would be to cntact neuro dev team and say you want to raise a formal complaint due to the length of wait and the impact it is having on yourselves an your daughters well being, they then have to respond to you within set time

[Bootrip2]

It is just so difficult to do the right thing, DD has got her appointment through for end of June, tbh it is a tick box exercise, the drs looking after her have been pushing me to get a diagnosis and i have been reluctant to pursue this as she already has so much going on, but realise that getting this additional diagnosis will help her later on, she is already at a special school.
Dealing with things is so very difficult, DD is 10 and is a people pleaser but like said above is torn between doing what pleases others and doing what she wants, dont even get into any rule-breakers! Trouble is at this age we also have possibility of hormones too! So much easier with a toddler!

[Doowop]

I contacted my MP 2 weeks ago to say I was worried about the impact moving to secondary school without the diagnosis and support in place could affect me mental and physical well being, he has let me know that he is looking into this for us and will hopefully get us pushed through a bit quicker

Thank you for taking the time to reply

[Lilly3580]

I'd definitely push for help with the secondary school, even if it's something as simple as a safe place to retreat to when it's overwhelming for her.
Our ds is autistic and actually coped better at secondary school because it was much more structured.
With the clothes just offer less choices and don't worry about coordination.
Youll have good days and bad days but the most important thing is that you care x

[T.jenni]

My advice is get a diagnosis
I'm a sen ta with a 13yr old dd. I've always known she has autism but before the normal teenage social and emotional challenges hit we managed it really well. Now I'm ashamed to say without access to support we are heading for crisis , completely my fault I know but she used to thrive, with the support of myself and our wonderful primary school. However as I'm sure your discovering secondary school is much more challenging.