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Can anyone help with understanding anxiety v ASD challenges?

13 replies

usernamebore · 01/08/2023 13:30


12 year old DS recently diagnosed ASD - prob what used to be called Aspergers - lots of masking etc, been doing well academically but lots of anxiety and crying meltdowns and sensory issues etc. School is the big fear for him, but also seems to have some germaphobia post covid, separation anxiety, fear of lifts and all sorts of other things.

We are still only a week in from getting the diagnosis and I am struggling with making the change from the old way of thinking pre-diagnosis that "This is anxiety. Avoiding the thing that makes you anxious just makes it worse. Therefore you need to keep pushing to build resilience etc" (hence why he did not miss a day of school last year, despite struggling so much). Now we know he is autistic and, as such, what was so hard about school and what made him so anxious is not something which is going to just magically go away over time, I understand we need to respect that and NOT push. If he is feeling overwhelmed and needs to miss part of a lesson to self-regulate, that is fine. If he cant cope with a school trip, he doesn't need to go etc.

I just feel so unsure of myself. Last year was so hard for all of us, but I still find myself worrying that if I dont push I am going to make his anxiety worse. I dont know how to tell when something is just a bit difficult for him and we should encourage him to do it, and when we should back off. I am scared of traumatizing him by making him do things which are overwhelming and I am scared of making his anxiety worse by letting him avoid things too much.

Sorry for the ramble, and I know so many of you on here have so much more in the way of challenges to deal with, but if anyone has any suggestions or book recommendations or anything that might help, that would be amazing.


OP posts:
openupmyeagereyes · 01/08/2023 13:41

My ds is younger do I don’t have the same experience.

What accommodations do school have in place for him? Does he have an EHCP?

Could you sit down with him and walk through the school day, asking him what he finds difficult about each aspect. Then work with school to see what accommodations they can put in place for him?

SusiePevensie · 01/08/2023 13:42

Naomi C Fisher writes a lot about this, as does Eliza Fricker. They have a particular point of view - but it's a useful and interesting one.

OvertakenByLego · 01/08/2023 13:46

I second Naomi Fisher. She has talked about resilience a few times, looking at some of her work may help.

You will learn DS’s triggers and signs when you can press ahead (with support/adjustments) with whatever it is a when you need to back off. You wouldn’t alway get it right and the threshold won’t always remain the same.

What support is DS receiving?

coldcouture · 01/08/2023 18:45

Have been in a similar position OP.

So the shift you are navigating is from seeing your DS as being in a 'deficit state' as an indiviudal, to seeing his environment as being in a 'deficit state' - in that it is not presently meeting his needs (given his current developmental capacity and emotional resources).

So please feel able to allow him to operate within his comfort zone as he will be able to build his self-confidence and relationships when he is in this space. As the environment becomes better tailored to meet his needs he will be less anxious and be able to tolerate more. You have to push school/LA hard, including via the EHCP process. You can give DS choices, but let him know that whatever he can cope with on any given day is OK, and that you know he is doing his best.

As Ross Greene observes, children will do well if they can.

There is no route through here based on toughing it out - you would just be demonstrating an insensitivity to his sensory and emotional needs. He needs you in his corner confirming that it is fine to be him, with his feelings and needs, challenging others to respect and meet these, in line with their legal obligations to him.

Luke Breadon has a useful book on autism and anxiety. The transition to secondary is tremendously hard for a lot of autistic children.

An EHCP, if he doesn't already have one, could include therapeutic support if indicated.

usernamebore · 01/08/2023 19:54

Thanks everyone. We only just got the diagnosis a week ago, and have sent the report to the school, but as it is the holiday I suspect we won’t hear back for a while. The supports we had last year were that he goes to the nurse at the start of the day to calm down and get ready, and then goes to form. He attends all lessons, but would go to one of his safe spaces for most of break and lunchtime (the nurses office usually). He calls me for about 5min or so every lunchtime. He got ear defenders recently which seemed to help a bit. Other than that he is doing everything else like all the other kids - an hour or so hw every night, a full on exam week at the end of last term with formal exams in the hall for every subject, going to and from lessons in the crowded busy school etc. He seems to find the lessons themselves ok, but the unregulated times between lessons and the times there are changes to the routine hardest.
no EHCP. He has been seeing a therapist once a week but we have realised that was not much help, not least because we obviously did not know he was autistic. We are currently looking for someone new with the right specialisms.
We are all still trying to get our heads around it all and work out how to best help him. There is a lot of anxiety and sadness there in him now which we really want to help reduce.

OP posts:
dressedforcomfort · 01/08/2023 20:34

In my experience, anxiety never subsides while sensory load is high. If your DS is struggling with the pressures of school, that will fuel the anxiety tenfold - even if it about things that seem unconnected with school, such as lifts. Look to do everything possible to reduce the sensory load first, and then you can try and breakdown the causes of the anxiety when your DS is relaxed enough to review the situation.

OvertakenByLego · 01/08/2023 21:37

Is the school an independent school? DS may find moving lessons 5 mins early or late helpful to avoid the hustle and bustle.

Some find noise cancelling headphones better than ear defenders.

For exams, look at whether DS needs access arrangements.

usernamebore · 02/08/2023 08:47

Sorry one more question - we both work full time, and DS is an only child, so holidays are hard. I am ending up letting him play computer games/watch tv for at least 4hrs a day or so partly because I feel like he needs this downtime after the rough year, and partly because we don’t know what else to do with him. He also wakes up at 6am every day regardless of when he goes to sleep (which I now think may be an ASD thing) so mornings are loooooong.
He can’t do any clubs or holiday camps as he gets too anxious and has panic attacks, and he won’t see any kids from school (and no one from his primary came to his secondary, and his couple of best friends moved to other countries, because life sucks)…I don’t know. Am feeling like a bad parent and everyone else seems to have kids doing weeks away in some adventure camp, or doing some sport thing, or being out with friends all day, and I am feeling like a failure…

OP posts:
openupmyeagereyes · 02/08/2023 09:13

Don’t compare your family with those that only have neurotypical kids. Focus your energy on what works for your family and what your son enjoys. I’m presuming you tried those sorts of things and they didn’t work out well.

Remember that every family has its own issues and you don’t see the whole picture. Also, having their time scheduled to within an inch of their lives is not good for kids either.

Now you have a diagnosis you can start to understand your ds better and cultivate a life that better suits you all. It may not be the one you imagined but that doesn’t mean it won’t still be good.

openupmyeagereyes · 02/08/2023 09:23

I can recommend a book called Differently Wired by Deborah Reber. In particular, part 2 of her book is great for helping to reframe everything you know about parenting when you have a ND child. I think her son was about the same age as yours when she wrote it. She also has a podcast called Tilt Parenting.

usernamebore · 02/08/2023 11:52

Thanks everyone - this is all so new to us, and we are having to shift from that central london, 11+, high-pressure, academic competition nonsense to something more healthy for all of us, but it takes time, and there is a lot of habitual thinking I have to unpick!

OP posts:
coldcouture · 02/08/2023 12:30

usernamebore · 02/08/2023 11:52

Thanks everyone - this is all so new to us, and we are having to shift from that central london, 11+, high-pressure, academic competition nonsense to something more healthy for all of us, but it takes time, and there is a lot of habitual thinking I have to unpick!

OP - letting go of that is really hard, especially as institutions are not always neurodiversity-friendly. I think the bottom line for lots of us on these boards is that mental health has to come first; both DCs and parents, everything else can be reschedule and modified, but worsening long term mental health issues will constrain everything.

OvertakenByLego · 02/08/2023 13:27

Being academically able is of little use if you can’t function in everyday life. Academics can always come later if necessary.

Rather than holiday camps/clubs, would DS cope with 1:1 sessions? DS3 has 1:1 tennis lessons rather than joining the normal group.

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