Anxiety Struggles

Thanks Autonomistic,

That's really helpful. I'll have a good look through all these this evening 

Thanks Tris,

I'm finding this more and more.

It seems the less they understand something, the more they seem to brush it under the carpet 

I hope you find something to help. Living with severe and constant anxiety is tough.

Another useful website, aimed at autistic young people, is this one:

https://autismunderstood.co.uk/co-occurring-conditions/anxiety/

Thank you.  There certainly is a lot to think about.

I'll certainly have a look through all these articles, I'm sure they'll be a massive help.

I definitely want to avoid medication if I can. I've been on anxiety meds for a while and, like you say, the side effects can be awful.

As a parent it's hard to know what to do for the best sometimes. This has really helped - thanks again 

Anxy73 said:

The best way to describe it is that he's living in a 24/7 panic attack.

It is possible for the body to get stuck in a state of hyper arousal, when anxiety levels have been so high for a long time the body is constantly secreting stress hormones and that becomes the new normal operating state. When someone has a very high baseline anxiety to start with then almost anything will seem completely overwhelming.

Anxy73 said:

He was referred to CAMHS, but they said his anxiety was too severe for them to deal with.

He may have had a lucky escape. I have read lots of accounts online of how their approach made the anxiety significantly worse. 

There is still a significant lack of knowledge and understanding in mental health services about how to help autistic people with anxiety. In many cases they will refuse to see autistic people at all, wrongly claiming that the anxiety is part of autism. I suspect it is more to do with the fact that they do not have the skills or experience to know how to help. Any case that is seen as 'too complex' is immediately dismissed.

https://emergentdivergence.com/2023/08/14/how-camhs-tier-system-obstructs-autistic-young-people-from-accessing-support/

Standard CBT therapies are often not effective for many reasons. The anxiety may be actually rational response to real challenges such as sensory overwhelm. Autistica are doing ongoing research into this and have produced an app to help autistic people with anxiety.

https://www.autistica.org.uk/molehill-mountain

One of the best resources I have come across is the book 'Avoiding Anxiety in Autistic Adults' by DR Luke Beardon, a senior lecturer in autism studies.

Anxy73 said:

He says his main worry is being able to socialise. And not, in his words 'stick out like a sore thumb, say something wrong

Socialising with other autistic people should be easier. as they will be much more understanding of any differences. It is known as the double empathy problem.

https://www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy

Socialising one to one is generally easier than in a group setting. Socialising in a group setting may only work if it is activity based related to a specific interest. 

Socialising online tends to be the preferred option for many autists. He could join an online community such as this one.

It's important for him to understand that socialising isn't compulsory. Many autistic people choose not to socialise in person at all (myself included). I tried so hard for so many years, before I realised I was autistic, but in the end decided it just wasn't for me. Socialising is supposed to be enjoyable and if it isn't why do it? 

There was some recent research on social anxiety in autistic people, reporting existing CBT therapies are ineffective in 90% of cases, actually actively unhelpful in 65% of cases.

https://www.autistica.org.uk/downloads/files/Social-Anxiety-Study-Feedback-to-participants.pdf?

Anxy73 said:

Our GP has been no help. He's just told us to basically crack on unt he's 18 and then they can give him anxiety meds.

Personally I'm not convinced medication is always the answer. Maybe that's why the GP wants to wait until he 18, to be sure it is definitely what he wants. My experience of antidepressants prescribed for severe anxiety was horrendous. 

Thank you so much for sharing.

The work experience is absolutely something I can look into, once we can help get his panic under control - he uses breathing at the moment and it helps to a point.

I have been looking for somewhere local, but seem to be drawing a blank. 

Hopefully the GP will re refer back to the child development centre and they may be able to suggest something.

Well it’s double edged but it gives you some leverage (you can take his switch away) if he doesn’t cooperate although it doesn’t sound like it’s a problem in this case.

I’d certainly encourage the baking if you can. Maybe he can sell what he bakes to friends, family, neighbours etc.

Are there any bakeries nearby looking for baking staff or where he could volunteer / do work experience if not now in due course?

As far as being able to socialise is concerned I think I’ll leave it to someone else to help, preferably someone closer to his own age - I am 58. I’ve never entirely found a solution myself, self-medicating for 20 years with alcohol (I’m effectively teetotal now). I wasn’t diagnosed though until the age of 50 (and as bipolar type 2 at the age of 53)

Are there any children’s / young adults autism groups where you are or even groups aimed at people with disabilities full stop? I volunteer half a day a week in a local community cafe where a lot of the volunteers have various conditions including in no particular order autism, Down’s syndrome, ADHD, bipolar etc.

Either on his switch, watching movies. Anything to distract himself - he's started baking recently, which is a positive.

He says his main worry is being able to socialise. And not, in his words 'stick out like a sore thumb, say something wrong and then  people think he's stupid' - he knows he isn't,  he just can't shake the worry bless him 

How does he spend his day?

Thank you both.

He doesn't mix with anyone online. He won't even speak to other members of the family. 

We have an EHCP for him and I'm currently trying to see if it will cover online GCSES whilst we work on the anxiety issues. He was referred to CAMHS, but they said his anxiety was too severe for them to deal with.

I have another appointment with the GP this week so will push for another referral and try again with a therapist. Willing to try anything at the moment x

The normal advice for panic attacks which I am sure you are aware of is to breathe deeply so I think I would try in the first instance looking into various breathing exercises to see whether they help or not. Initially they may just treat the physical symptoms but in time they may also help with what’s causing the attacks.

The big advantage of breathing exercises over meds is no (or minimal) side effects.

As far as leaving the house is concerned the normal approach is little and often and gradually build up the distance he is able to go from the house. You could start with as short a distance as your front gate, the end of the block, the end of the street etc.

Does he mix with anyone his own age online?

These days especially after COVID there are more and more resources online so he may be able to study online / you may be able to home school him depending on your circumstances. In due course there are also organisations such as the Open University although a lot of universities probably offer some courses online.

I hesitate to say this because not all autistic people have special / particular interests but does he have any special / particular interests? Basically the idea / recommendation if at all possible is to work with the interest instead of against the interest.

I think my parents had to be pretty proactive in terms of insisting on referrals and not taking no for an answer when I was that age and needed help. Like they might have heard about this adolescent psych unit and insisted I was assessed there after being dismissed by the more local mental health team as just being lazy. 

I found being a day patient there very helpful. Idk how I would have even survived from 16-18 otherwise.