Suspect anxiety/asd but reluctant to get a diagnosis

[mummarunner]

Hi

This is an odd one. My 7 yo ds has been displaying what seem to be a combination of anxiety and asd symptoms for most of his life. Examples: biting his nails, very introvert (won’t interact with friends at the school gates), sensitive to comments made by others, hates change, easily upset when something goes wrong, hard to interact with unless on his terms, blows problems out of proportion. On top of this he suffers from acid reflux (since birth), doesn’t seem to need much sleep (again since birth) and experiences feelings of “spinning around in space” in bed. There are so many little things that I would have thought normal until my second child was born and now that I can compare the two (she’s 5) I can see clear differences and in my heart I know there is something a little “different” about ds.

The thing is I am reluctant to go down the diagnosis route. It seems common these days for parents to want to get an assessment as soon as they realise something isn’t quite right, but we have got so used to managing his behaviour and pre-empting how he will react in certain situations that we feel as parents that we can handle this ourselves. We don’t want to make a big deal out of it with him and put him through the trauma of doctor appointments and assessments. I suppose my question is, will our reluctance to put him through tests and assessments be to his detriment later on in life? I feel quite strongly that he is just a little “quirky” and we can manage those quirks ourselves. He’s doing brilliantly at school and has a couple of close friends. Surely the school would have said something by now if they had concerns? We have raised his anxiety with his teachers before so they know where we stand on it.

Any experience or thoughts would be so welcome as I’m not sure what to do at the moment. Thanks so much!

We had similar thoughts to you about our Ds. He has always had traits and it was around the age of 7/8 that we realised he probably had ASD. He seemed to cope just about at school and we were reluctant to go down the diagnosis route as we thought we were managing.

All I can say is that it was a big mistake. Ds started to struggle a bit in year 6. Naively I thought the move to secondary might help. The transition to secondary was awful and things have gone down hill ever since. We approached the school the middle of last year and they ended up referring him last July. The senco initially said there were no problems but some teachers had concerns and now they agree with us and think he has ASD. He finally has his assessment in two weeks time. This school year has been the worst so far. It seems that all his coping mechanisms fell apart as soon as the pressure of secondary school and puberty hit. I really regret not pursuing a diagnosis earlier. He starts year 11 in September and has gcses next year. I feel guilty that he is going through the diagnosis process now. It's horrible for a teenager when they know they are different but don't know why. We have had quite a few battles with the school to get him support too. Sorry not a happy story! But I would do things completely differently if I could go back in time.

Of course things maybe different for your Ds. I would keep an eye for now but if you do think you might want to go down the diagnosis route with him I would do it before secondary.

Our DD was diagnosed when she was only 4, but honestly I know that if we hadn't had a nanny (who picked up her differences) we would not have picked them up at home, and I don't think school would have suggested ASD either (I think they might have said she was a little shy or anxious - but nothing beyond that).

I still worry a bit about whether having a Dx could hold her back, but on balance I'm glad we got one. From everything I've read kids on the spectrum who manage well at primary school can still come unstuck pretty quickly at secondary, and I think knowing DD's Dx (a) helps us support her better now, so she grows up with the best possible mental health, self-confidence and self-regulation skills (though theoretically we could do this without a Dx, I think it's much easier to get school on board with accommodations if you do have a Dx), and (b) if she does have a crisis later we'll be able to start to look for support without having to go through a long (possibly mentally draining) Dx process first.

It might be worth reading some of Chris Bonnello's website. He has various articles with advice to parents and autistic kids, and also talks about the pros and cons of having (and knowing about) a Dx.

autisticnotweird.com/
autisticnotweird.com/when-should-i-tell-my-child/

His mantra of "wait until the information will be useful to them, and then waste no time" is much easier to implement if you know confidently yourself if your child is autistic or not!

Its a personal decision but my feelings are if you believe a child has a medical condition its best to get the ball rolling for diagnosis and support as it takes ages. You may well be managing now and that may stay the same. I really hope it does. but if you wait until you arent managing eg your child can no longer cope with school, you could end up with a mess. I say this as a parent who managed my child fine until he fell apart in year 4 and then we had a whole year waiting to get diagnosed and were then put on wait lists for the right support. An earlier diagnosis wouldnt have been magic but it would have significantly helped us avoid a year out of education. It was only talking to specislist i realised quite how much we were adapting around our child and how as he got older the gap between him and his peers grew and by us adapting he wasnt learning important skills.
Perhaps speak to the school senco and see what they think?.

Thank you for all your comments. Some really valid and interesting points which has given me a lot to think about. To be honest I hadn’t even thought about what the future holds, particularly secondary school, so that had really made me think twice.

Like I said before if I hadn’t gone on to have my second child I would have thought ds was completely “normal”. It’s only now I have a sibling to compare him with that I see how much we are actually adapting our lives for him, how we have to make allowances for him, often walk on eggshells around him and have to pre-empt how he will react to certain situations. Dd is so much easier in comparison.

I suppose my biggest fear is him isolating himself from his friends over time. They might to start to think of him as “odd” because he doesn’t always fit in, or see him as anti social because he absolutely hates parties.

To whoever posted the links, thank you I will read through those this evening.

Really helpful to hear your experiences, thank you, and I’m sorry to hear how difficult it has been for some of you. I do appreciate you taking the time to respond. Xx

I really agree with the comments around transitioning from Junior to Senior school.

DD severely struggled to the point that they started to talk about excluding her. She was so over whelmed with the class room changes, different blocks, teachers, expectations years 7, 8 & 9 were a right off pre diagnosis.

Now everyone is clear with what they are dealing with, have plans in place and are more observant DD is doing really well in school again.

We went with "quirky but that's fine" for years. His high ability was more of a talking point with teachers than his quirks. The wheels fell off big time when he transitioned to junior school. In juniors his difficulties are becoming more apparent every year and with a diagnosis in place and with ourselves much better informed, we have more of a fighting chance at securing the support he needs at secondary... Not that it's assured by any means.

Expectations for children change every year. The childcare settings that took him no problem at 7 and even 8 now say he needs a one to one at 10.

My son had zero trauma from the assessment process. He loves knowing he is autistic. It makes sense to him and it's part of him like brown hair and freckles, it's not a millstone round his neck. Children get labelled anyway - he gets more understanding as someone who's autistic than if he were labelled antisocial, naughty, rude, inconsiderate. I'm 100% sure he would tell your son he is glad he got diagnosed. Whether his opinion will change when he's older, who can tell?

Thank you for your comments! I really appreciate your insights in particular surrounding secondary school as I simply haven’t thought that far ahead yet.

Ambydex your point about all children being labelled anyway is spot on. You are so right and given me lots to think about.

DD1 is a the same age and I've flagged up concerns about her anxiety for a while (I have anxiety and depression myself and have just learnt to function through them as an adult) - personally I have suspicions she'll start to flounder around the year 4 point and we'll end up heading toward an ASD diagnosis but for the moment it's so well masked and coped with that it's just a little niggling suspicion.

What I have done and school have worked with me to do is to cut her some slack with her behaviour coming up to transition times (she masks feeling anxious by going into overdrive and getting very very backchatty and over the top silly), and putting extra support in for transitions between year groups etc. She's also working with someone from our school nursing team to discuss ways to manage her emotions - I don't know how much use it is but if we need to push down a diagnostic route later it's at least an initial hurdle they'd ask us to do pre-empted, and she goes to nurture group once a week as well.

I don't worry about a label - but right now I think sitting back and seeing which way she goes with things is probably the right way to take things for our particular set of circumstances.

When people ask why I pushed for a diagnosis for ds1. I say that I would rather he has the labels 'dyslexia, dyspraxia and autistic' than 'lazy, immature, naughty, clumsy, annoying, stupid, stubborn, rude etc etc'. Because he has atypical autism he often presents as NT, the problem comes when there is a problem. He then behaves in a completely unexpected way. His diagnosis has not held him back instead it has been a buffer when things are not going as well. The paediatrician did offer us the option of not recording his diagnosis on his records but I am glad they did as whilst he has not had many problems I think we would have had more and I think the ones we have had would have been treated differently.