Getting help/treatment for anxiety

[AyeToIndy]

Hi all,

My 7y/o DS is on the ASD pathway, he has input from educational psychology and inclusion and wellbeing at school. Hes also profoundly gifted. I'm really struggling with his anxiety. It is genuine medical anxiety with physical symptoms and serious impact on his day to day life. Each of the professionals we see seem to think that it comes under somebody elses remit. There was a referral to CAMHS who were doing nothing but attending his IEP meetings and have recently disappeared. I have no contact details for anybody from their department.

Im going to try and get an appointment with the GP tomorrow to try to raise the issue. Does anybody have any similar experience or pearls of wisdom for me? I know what i want to tell the GP but short of a magic wand im not really sure what im asking them for. We are in Scotland if that makes a difference

Our experience with CAMHS was very poor. Assessment, yes, but no useful treatment unless you want to go the medication route (which was a disaster for ds2 but works for some children). What helped for ds1 was therapy masked as other things so via Forest School and Equine Therapy teachers were able to help him talk about his feelings and manage his anxieties. We were lucky that this was provided by his school (an independent specialist school) but there are a number of private providers who do this sort of thing albeit at quite a price. Do not also expect a quick fix it has taken years with ds1 and ds2 is still very disabled by his anxiety.

Another thing is that is is key to maintain your own good mental health - you will have the resilience to help you child more if you take time to look after yourself so don't forget this as it is all too easy become stressed and anxious yourself when you are caring for an anxious child (or two in our case).

Thank you for replying. There is an animal/outdoor based therapy center near us so I'll have a look into that.

Just back from the doctor who basically said because hes on the pathway we just have to wait and the current wait for CAMHS is 18 months. Appropriate support is really very hard to find. I just feel like if there was anything else wrong and i waited 18 months to do anything about it the social work department would be all over me. Its not just him that suffers but his brothers and the children in his class. I suppose its just one of those things thats unfair

My daughter, nearly 10, suffers severe anxiety. She too has been referred to the ASD pathway. At present we are unsure if her anxiety causes traits of ASD (like hand flapping when anxious, walking on tiptoes as legs are tense, and fearing 'new' things) OR if ASD causes the anxiety. My son 6 has ASD but his developmental differences were obvious (to me) from an early age - I had no concerns about my daughter until two years ago.
Anyhow...
In two years, we have seen the GP about six times altogether.
We have worked with the Health Child Team twice; (who advised further support needed;) we have been to CAMHS (who were of no help whatsoever (and discharged quickly as my daughter had a few 'good' weeks;) and we have seen a paediatrician (who referred to the pathway.)
So...
After such a long time of anxiety but nobody actually talking to or working with my daughter, I have started paying for a private child therapist/psychologist and my daughter has her first individual session with her next week.
The therapist says even if we are looking at ASD - she can help with the anxiety.
I am keeping everything crossed as, at present, her anxiety is dibilitating for her and effects all of our family.
Big hug

I'm experiencing similar with my 5 year old just now - came on here to post something and found yours.

Very similar experience - very bright child with anxiety around school - have asked several places for advice but feel at the moment that I'm getting fobbed off as 5 is still very young and keep being told it will settle down.

Is your son's anxiety purely school based? What symptoms does he display (if you don't mind me asking)?

I understand your frustrations - you just want someone to take notice before it gets any worse, especially when in our case it is such a sudden change in behaviour! But it affects all of your family life so I understand how worrying and exhausting it must be for you.

@pandyandy1 its so frustrating isnt it! Good luck with the therapy, i hope it goes well.

@HairyMaclary5 unfortunately his anxiety shows itself at home and at school. He gets a stiff neck, pains in his stomach, his brain 'whizzes', his breathing gets heavy, his heart races and if its really bad then his pupils become so big that he gets sore eyes/head because he's quite sensitive to light. Unfortunately nobody wants to touch the issue with a barge pole because hes on the pathway. If i had realised it would be that way i would have addressed the anxiety before the ASD as i have known since he was one that we would end up down this road and already have strategies in place at home to help.

If your sons issues are purely school based have you explored enviornmental issues (bullying, noise levels, high ability in one subject but struggling in another etc)?

What a shame, that sounds really debilitating for him. Are there particular triggers for his anxiety?

My DD is that bit younger, so it's harder for us to know what the triggers are for her and she can't or won't always tell us, and definitely wouldn't tell the teachers. The problem is that she can come across as confident to folk who don't know her, so teachers are putting it down to her just being naughty and aren't really offering any help at the moment.

Does your DS have some coping strategies he can use when he knows these symptoms are coming on? Have you tried any books on anxiety with him? Kids yoga or Relax Kids? The key thing, I suppose, is to try and keep things light and fun and have a laugh as much as you can, though I know this is hard!

His triggers can vary, sometimes its sensory, other times its overthinking because hes bored and sometimes it appears to be random. He does have some strategies, one of the most helpful at school is he has a free pass to go to his safe space which is quiet and has calming activities ready for him. The problem is him recognising it coming rather than reacting to it. He loves yoga and will do it at school but i just cant get him into it at home.

The school spent a year treating him as a naughty child and me a bad parent before they actually listened to me and provided some assistance and the referrals i had practically been begging for. The turning point was when i presented them with a catalogue of my own observations of his behaviours, triggers and warning signs so that they could see it as i did. Sometimes you need to get it very clear in your own mind before others will go along with it. We also self referred for a triple p course just in case the issues he was having were purely behavioral. That really helped in terms of speeding up referrals and even though his problems were NOT purely behavioral we found it really useful. It alloed us to clear up any issues we could and see what was left and what those issues pointed to

I don't have any pearls of wisdom about dealing with an anxious child, but I remember being one.Extremely oversensitive, terrified of change at school, terrified of getting things wrong, very fixed about winning or losing or losing face, very solitary in playground, very black and white thinking about various issues, such as whether someone was going to sit next to me or not. Academic in other ways. Fear of risky physical activities, climbing trees, horse riding.

What helped me, and made me into long term a less anxious child, with a friendship group, and happy enough at secondary was a) books, b) craft c)lots of dancing and nature based activities -woods and water d) pets (non judgemental) e) playing with younger and older children (I found my peer group quite challenging) f)singing g)non competitive games - in fact as little sport as possible, in comparison to walking, dancing and just being outside/swimming. All games which required winning or losing or skills made me very anxious, I was slow at processing or dyspraxic possibly.

I also think that I may have suffered a vitamin d deficiency (I lived in a northern clime, Ireland) and there was a run of grey summers in the 60.s which was corrected when I spent more time in the sun between 8 and 11 years old (moved to South East UK then)

HTH. It is awful being an anxious child, I remember to this day refusing school because I dreaded lunch hour so much, and frightened to tell anyone why I felt so bad. Physical feelings associated with fear and anxiety. My parents tried hard not to put too much pressure on me, having siblings helped ironically, and an outdoor lifestyle as a family. But I think they found me very exasperating to deal with, as they were naturally physically brave and energetic/fearless, rather than introverted. So I think adapting family life can help a lot.

My anxiety was much improved in teenage years and beyond. Although occasionally flares.

my anxiety also took the form of severe tantrums as a younger child and extreme clinginess.My parents sought a pyschiatric assessment where I was diagnosed as controlling (no autism diagnosis in those days) and I think they didn't do anything after that because I "improved". My brother also exhibited what I now think was possibly ASD, rages and perfectionism, anxiety about doing his best, very sensitive, many many worries. My parents again found this very difficult, but possibly didn't give him quite the right help as they encouraged him to be ambitious (thinking his cleverness would be a source of comfort to him) which exacerbated his anxieties about being the best, when really I think the most important thing was to defuse and calm, build his confidence in other ways (than academics) and nurture his social relationships with others.

@Nettleskeins thank you so much for taking the time to give such a detailed reply, I've genuinely found it very helpful. I see a lot of my son in what you have said about yourself. Im trying to build him a better social network, he had a really bad experience with bullying last year which really sent him on a downward spiral and ended with him only managing school part time. He doesn't really get invited to anything outside of school so ive started orchestrating events with his input and assistance. This seems to be helping and hes just had a party invite, its the first one in 2.5 years so hes delighted.

I also allow him free passes to opt out if i feel he needs them. This seems to have improved our relationship since i started it a few months ago. And he doesnt use them half as much as i thought he would, mainly it has helped him to talk to me calmly about his feelings and for us to find solutions together.

I, like you, can see this running through my family when i look back. I'm really so happy that things have changed now and attitudes are starting to be more accepting

This actually just reminded me of something i had totally forgotten about.

About 18 months ago when i was pregnant and struggling to deal with a few other big life events i had a massive panic attack at work and had to come home. My son was there and saw the state i was in so once i was feeling up to it i talked to him about what was going on (obviously in an age appropriate way) and told him i was taking some time off from work to help me to feel better and allow me to be a better mum to him and his brother. Later that week his teacher pulled me aside to tell me off for talking to him about my mental health. I took none of it and explained to her how i wanted my family to understand mental health is as important as physical and to feel comfortable talking about it. She was horrified and basically accused me of being a really awful parent. Fast forward to the next academic year and she was always eyeballing me around the school and at events etc. I now realise she was gathering information so she could report me to the social work department. They came to see me and saw through all the nonsense she had cobbled together and helped me to feel confident that what i was actually being a really good parent. Part of me hoped i was actually doing something wrong so that they could offer some kind of help, i feel really silly saying that now!

Anyway, im waffling, the point im trying to make is that i think openness and really listening to children when they are communicating with us (verbally or otherwise) is so so important and showing them that we are all the same helps too. Im really proud that im trying to show and teach my son empathy rather than pushing him to be some sort of Mrs snippy teacher approved android

My 7 yo daughter has just been diagnosed with ASD after an 18 month plus wait, with anxiety a big part of how her ASD presents. Myself and my husband have been offered places on a course to help learn strategies to help manage her anxiety, but no one on the NHS (in our area) actually offers anything for her at her age.

I think if we actually want her to get any help (outside of what we can offer and what the school can provide) we would have to find it and pay for it ourselves basically.

If I were you I’m sorry to say even after waiting for the diagnosis there might not be anything offered specifically for your son. So I wouldn’t wait for the ASD pathway on the assumption they will then help with his anxiety, outside of perhaps support for you to help him, if you see what I mean

Sorry to not be very helpful but I hope it’s useful to know what an ASD diagnosis actually offers FOR the child’s anxiety specifically, which isn’t anything really

Lots of good advice on this thread. My DD has ongoing issues with anxiety. She did have counselling through CAHMS and we were lucky and didn't wait long for an appointment. It was very helpful and has given her techniques to deal with it - both mental ones and also physical ones.
She's never been considered for ASD but I do recognise some of the symptoms other people mention on this thread - such as perfectionism, hand flapping and others. She's a little older now and can manage not to do things like hand flapping and talking to herself, I think she's developed other ways to deal with big emotions. She's an intelligent girl and channels a lot of this nervous energy into creative things such as writing, reading, drawing. Counter intuitively she manages much better during school time. I think the structure helps.
I'd agree with the posters saying finding good, therapeutic activities is helpful.
My DD also really enjoys Guides - more structured, busy activities but with a really lovely social side too.