Reasons to get dd an asd assessment

[MissShapesMissStakes]

My dd(7) has been to pre-school but never school. I also Home Ed my older child.
The older my 7 year old gets, the more clear to me that she is autistic.

I used to work with autistic children and the realisation has taken me an embarrassingly long time to come to. I have a couple of friends on the spectrum and one blurted it out one day that she always assumed I knew this. Now I can’t see how I never saw it.

Dd can be very stressed very easily. Especially when things she expects don’t work out. Or routines or plans change. We are on ‘holiday’ at the moment and the from the first day it’s been meltdown after meltdown. The dinner wasn’t as we usually have it, the bed wasn’t hers etc. I have learnt to hug her and say things like ‘I know, it’s tricky for you, I can see that’ etc. And we ride the meltdown out and usually can come up with a solution eventually.

She struggles with choices. Even ones in her head. Like should she have one imaginary dog or two. And that will become an obsessive q and a session until she decides.

There are many other indicators.

Anyway. I know the benefit of assessment for kids as in they can come to realise that nothing is ‘wrong’ with them. I know adults who have only just been diagnosed and what a relief it was for them. I occasionally have suggested to her she has the same struggles as people with autism. We know a number of children with asd and we talk about that and how it effects them - strong points and tricky stuff. So I would hope that a slow realisation will happen for her.

She is also very anxious around other people. I would say she is selective mute. In that she will talk LOTS in front of her close family. Otherwise she will clam up, hide behind me and be incredibly anxious. She is also acutely self aware and anxious about how others see her. So I know the fact that people would be discussing her in detail would make her immensely stressed and anxious.

She wouldn’t need the additional help at school (not that she would get it anyway with the funding available now).

A few of my friends have seen our struggles and suggested an official diagnosis. My dh really doesn’t want to go down that route. She is who she is. We work out ways to support her. I know strategies through my work. I also am in touch with specialist teachers, support workers and parents of children with asd.

I would only go down the diagnosis route if it benefitted her. And I’m not sure I can see that right now. But then I don’t want her to think we have brushed it under the carpet when she is older.

Any advice/opinions would be much appreciated.

Sorry it’s long. It’s been a stressful time for a long time.

I wanted to add - my worry is that I am wrong. That she isn’t autistic. That either it’s my parenting that’s messing her up as I am treating her as autistic and maybe I need to just be tougher. Or that maybe it’s PANDAS. I know how unlikely that it. But actually this all started off when she was around 3 and she began refusing to touch the carpet at home with her feet. And then she wouldn’t stand on my friends floor because it was too stripy. She then became more and more sensory sensitive. But also developed a number of tics. Until she was 6 she had tics. But they seem to have gone now. Though I feel her stress levels are now hugely up.

It is a very tricky one. I would sit down and calmly make a list of all the positives that a diagnosis might bring looking long term - will it help with access arrangements for exams, access to groups and clubs suited to her needs, family support or access to CAMHS or OT or other help. Then look at the reasons you don't want to get one and weigh it up.

I think it would be useful is she is on the autistic spectrum for her to get a diagnosis at some point. If she needs more support with everyday things that a neurotypical child of her age, you may be able to get financial support for eh, needing to get taxis because the crowding on a bus makes her have a meltdown or whatever. Also it is important as organisations have to be inclusive for those with a disability. Imagine when she is older that she wanted to start Guides or a drama club or have swimming lessons or whatever. If she has been diagnosed with disability, those organisations are required by law to make reasonable adjustments to accommodate her. Also, as she becomes an adult, it means that work places can't discriminate and have to make reasonable adjustments too.

Thank you for your replies.
She def struggles with her idea of ‘crowds’ and public transport, public toilets (hand dryers, smell, spiders, unclean) really cause problems. I have bought a radar key for that but it’s not always much easier anyway.

I will do a list. Might ask a couple of friends with asd kids to help me. My dh earns enough to keep me off work and have a car etc. I don’t think we would qualify for many benefits/financial help. She’s not ready to access clubs etc but maybe eventually that’s something I hadn’t thought of. She does do a few home ed clubs. If the structure is there and she has either her sister or her only friend there (and I am close by) she is ok. I need to be very selective.

I'm not sure the disability benefits for travel etc are means tested.

I'd get on a waiting list and then decide nearer the time. It took me 4 years of pushing to get an ASD diagnosis for ds.

Well, you’ve given a couple of good reasons to do it in your own post - your dd may soon (or may already) realise her behaviour isn’t typical and be worried about it or think that there’s something wrong with her.

The negative seems to be that your husband doesn’t want to. Is that enough of a reason to prevent her accessing groups and services that may help her navigate this more easily?

For my DD2 (who went through 3 primary schools and was HE at one point), the biggest thing about having her Dx is being able to say "why do I... Well I know I do because I'm autistic... But I do this, because of this." Having a concrete 'why' for the things that she finds difficult/challenging has freed her to be her. She knows she has autism, and the knowledge that there isn't something inherently 'wrong' with her, but she just has a different wiring system has given her a massive boost in self-esteem.

Sportsnight - the negative isn’t that my dh doesn’t want to. It’s that neither of us are sure it’s in her best interests right now. She is incredibly self aware and very much expects perfection from herself. If she has a scratch or little spot on her face she stresses about what others will think. So to discuss her ‘imperfections’ in front of her with others (she is also incredibly uncomfortable around other people and she certainly wouldn’t talk to them or in front of them) would be very upsetting for her. I’m worried what it would do to her already very low self esteem and confidence. I think this is the main reason to be honest.
She gets very angry when she has been ill and people ask her how she is. She often will say that everyone is looking at her when we are out (they aren’t).

We don’t need to claim for help with costs right now as we are lucky enough to be able to manage. That obviously could change.

She does see I think that often her feelings and behaviour are different to others. Of course we do know a number of people on the spectrum and we often talk about how everyone is different. I think she thinks everyone else is weird and that she is completely reasonable at all times.

Cece - four years is a long time! This makes me really think we need to be starting the process. Do you mind me asking how it all starts when kids are home ed? Im assuming I go to the GP. But would I be able to go without dd to discuss her bluntly?

Perfectionism and very black and white thinking are very common in autistic people. Have you tried using the social story technique to write about how everybody makes mistakes and that this is ok. I've done this with autistic students and it has really helped.
I also think you could go to your GP without your dd to discuss the situation and ask for a referral. Explain the difficulty with her perfectionism and ask how s/he suggests you play it. Also take a comprehensive list of the traits you have noticed in your dd.

Thank you Educating Arti.
I suppose I’m nervous of going to the dr and starting something that we then decide isn’t in her best interests right now.
I love social stories! I used to be the ‘go-to’ social story writer at my work. I actually haven’t tried them with dd as her conversational skills are so good I have tried to chat about things instead. And I make sure she sees that I make mistakes and am fine about it. But yes. Some social stories might be a good idea thank you.

Tbh, as an adult, I am finding more and more that I wonder if I have ASD myself. As time goes on, my mum reveals more and more things from my childhood behaviour that ticks boxes, and I find more and more that I struggle with situations. It would be nice to 'know' and it's much easier to find out with children.

There is something special about the format of social stories that helps the information to be accepted. I've also found that some students with autism respond so much better when they see something actually written down, even though their language and conversational skills are good.
As for nerves about starting a process, well, I guess you can't ever be certain which will be best as you can't live out two alternate realities.
I don't even think your daughter would need to know she was being assessed for autism. You could perhaps talk about it in terms of seeing someone who is interested in how different children's brains work and different ways that children see the world and think about things. They would like to know what your dd thinks about things and what the world is like for her.

Getting on the CAMHS is the first step, after which you may have to wait at least a year (2 for us) and a lot can change in that time. Puberty brings new issues and girls on the spectrum are at a higher risk of some issues like eating disorders. Also, getting a diagnosis before the teenage years means they have more time to get to understand themselves before all the hormonal changes kick in and affect confidence.

There is a book called Different LIke Me: My book of autistic heroes. My kids liked it. It is also priceless if one parent has many autistic traits and talks about their possible autism in a positive way, or explains that they too get really tired after going somewhere busy as noise and crowds affect them. I got my diagnosis for this very reason.

Bear in mind that the timing of diagnisis isn't something you can necessarily control. First there are waiting lists. As your child gets older they may reject assessment and refuse to comply.

I have a friend who took a "wait and see " approach. Now her ds is 14 and it's falling apart big time, she is desperate for a diagnosis he's head of the queue - and he refuses to attend.

The teen years are really difficult for many with asd (and their parents) but they are not an ideal time to introduce the idea of neuro diversity imo.

I think if your daughter is exhibiting all this stress in a home environment, then clearly she would need support if you ever decided you needed to get her into school, or college later, or to access certain protections later. I think getting a diagnosis has a lot of benefits and I cant think of any significant drawbacks. I would, and did pursue this