Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

Does anyone else here feel they are held hostage by their child’s autism☹️

23 replies

Bobrosspaintbrush · 16/06/2021 18:38

I’m just at a low with it today.
Went out to a shop today, arranged to meet my mum, I haven’t seen her in a year.
Took him with me because I had to take him out of school because of his anxiety etc.
I told him yesterday what was going on today and he agreed to come.
It was a disaster! He spent the whole 10 mins we managed in the shop hiding because “ he wasn’t ready to be seen” then just started running out of the shop because there was a shop assistant with a really loud voice talking to a customer.
Gave up in shop took him back to the car me and mum stood outside the car chatting he was just crouched in the footwell crying after 5 mins Or so I decided to leave and bring him home.
I feel a bit shit for putting him through it tbh.
I feel shit because we can’t do anything.

OP posts:
baldafrique · 16/06/2021 18:40

Sounds awful :( How old is he?

Boboparadise · 16/06/2021 18:43

That sounds so stressful. What are the reasons for his limited school time?

Foxhasbigsocks · 16/06/2021 18:44

Really sorry to hear this op Flowers

Interested in this thread?

Then you might like threads about this subject:

Families
GiantToadstool · 16/06/2021 18:44

It sounds really difficult :( I do know the feeling. Do you want support or suggestions?

Have you done an early help course or autism uk course or anything? Do you have any other sen parents to chat to?

Shops are really common triggers for autistic children. It can be very overwhelming.If that's a trigger it really is worth meeting somewhere he can cope with.

It does feel so hard and that you need to plan for every eventuality. Mine has refused to touch sand and we live near a beach, which the other child would love to go to every week... 🙄.

There are people on here who have been there and can support (we don't do shops unless planned in detail in advance and for soemthing the child wants...)

GiantToadstool · 16/06/2021 18:45

Is there a plan for school? Have you got help with this?

GiantToadstool · 16/06/2021 18:45

(Sendias/ local council parent support?)

Original poster
Bobrosspaintbrush · 16/06/2021 18:48

He is 12.

OP posts:
baldafrique · 16/06/2021 18:50

Really feel for you both. Will he be getting specialist school provision? Is medication possible for his anxiety or too young?

ipswichwitch · 16/06/2021 18:56

Don’t be feeling shit for putting him through it - you prepared him for it the day before, and he agreed. What more could you have done there? We’ve had to give up on many trips out because DS2 (also autistic) isn’t coping. I keep telling myself it’s got to be worth it for those times it all goes great and he does manage it and has a lovely time too. There’s been times he’s done something many times before without any issue, but for whatever reason that day it’s just not manageable for him. DS is also triggered by shops, and loud people (in spite of him being the loudest person I’ve ever met 🙄), and tannoys used to have him running out the shop door. Now he’ll just clamp hands on ears and yell at the tannoy person until it stops!
You’re not alone in feeling like you’re held hostage, I hope school are being supportivez

Original poster
Bobrosspaintbrush · 16/06/2021 18:57

I had to take him out of school because he stopped eating and he barely eats anyway he can’t eat when he is anxious ( has a phobia of being sick) his weight dropped to 3 stone. In the end it seemed cruel to keep putting him through it day after day and with covid in and outs it was always stop start situation ( if that makes sense)
He is doing well with homeschool gets on with his work and seems more relaxed.
I’m hoping to get him back to school end of year 8 I’m hoping I get support to help me do this.
He seen Cahms in April but I haven’t heard anything from them.

OP posts:
baldafrique · 16/06/2021 19:00

Can graded exposure help children with ASD? I have no idea whether its indicated or not. Like creating a hierarchy of anxiety provoking situations and working incredibly slowly to build habituation and tolerance.

Original poster
Bobrosspaintbrush · 16/06/2021 19:02

It was a fabric/ craft shop so we could choose map fabric for curtains for his room ( he loves maps) and some stuff for him to do on his art day but we didn’t get that far.

OP posts:
blissfulllife · 16/06/2021 19:07

Hi op.

Mom of an ASD child here who was out of school for 16 months up until 6 weeks ago. So I understand how isolated you're probably feeling right now. I too have times where I feel our lives are totally dictated by our child's autism and needs. And it's magnified when they are with us 24/7 and homeschooling.

Does your son have an EHCP in place? I took my daughter out of school due to anxiety and because it just wasn't the right setting and was making her mentally very unwell. I did a parent led EHCP because her school at the time were very unhelpful and started to try get help through camhs, autism West Midlands and a private therapist.

During that time it's been one if the most stressful times of my life and I've been so stressed and lonely. But we've now got the EHCP and she started at a specialist ASD school 6 weeks ago. They are wonderful. Very small school with only 5 to 7 pupils per class, reduced timetable, lots of staff, regular in school councillor, lots of support for her and us. It's changed her life and we can finally see light at the end if the tunnel. That few hours break a day is invaluable.

Hope it all works out for you x

Original poster
Bobrosspaintbrush · 16/06/2021 19:25

blissfulllife
I did want him to go to the specialist school for ASD children , but was told by the Ed psychologist that he wasn’t autistic enough. Even though this school does educate to GCSE and A levels.
I was also told that that my LEA would never pay for him to go there because the school is in a different county even though it’s only 15 mins from my home.
I spoke to someone at the education the other day because they sent me a home Ed form to fill in and the lady said he didn’t have a EHCP because he doesn’t struggle academically.

OP posts:
Original poster
Bobrosspaintbrush · 16/06/2021 19:31

@ baldafrique
He has begged for medicine so he doesn’t feel like this any more, but I was told they follow nice guidelines and like to try other things like therapy before they give medication.
I’ve looked at private therapy but to be honest I don’t know what type of therapy I should be trying, and he won’t talk to people.

OP posts:
Bagelsandbrie · 16/06/2021 19:31

Does he not have an ehcp then? You can apply for one yourself through your local council, you don’t need the support of a school to apply (we did it ourselves - our son is 9 and has complex learning disabilities and autism).

It can be extremely shit. Flowers

My son is going through a period of not sleeping - literally not sleeping at all. Crying on and off all night and running up and down the hallways etc. I am just about broken with it now.

Original poster
Bobrosspaintbrush · 16/06/2021 19:32

@ GiantToadstool
I will give that a Google thanks

OP posts:
lizkt · 16/06/2021 19:36

OP, my daughter has a condition that presents a lot like ASD. One of the best things we ever did was see a private child psychiatrist. He started her on anti-anxiety meds and it has helped so much, that we can now lead a much more normal life.

CAMHS are not great imo. Therapy just does not always work for some kids.

Original poster
Bobrosspaintbrush · 16/06/2021 19:38

@ Bagelsandbrie
The not sleeping is awful we do that he just sits in kitchen crying and he doesn’t know why. I’ve sat up til early hours building lego with him god knows how many times.
I will look into applying for EHCP myself.

OP posts:
Original poster
Bobrosspaintbrush · 16/06/2021 19:42

@ lizkt
CAHMS are rubbish here I waited 2 and half years for him to be seen for diagnosis in the end they outsourced us to a private clinic because their waiting list was so long.
I might give that clinic a ring in the morning and see if they can advise anything like seeing someone to give him medication or asses him to see if he would actually benefit from therapy.

OP posts:
Bagelsandbrie · 16/06/2021 19:43

@Bobrosspaintbrush

@ Bagelsandbrie The not sleeping is awful we do that he just sits in kitchen crying and he doesn’t know why. I’ve sat up til early hours building lego with him god knows how many times. I will look into applying for EHCP myself.
You can do it. Flowers It might help you to get him into a specialist school. My son goes to an autism specific school 23 miles away from where we live (he has a taxi and an escort to get there). It’s been amazing. Not perfect, these things never are but better than any alternative.
lizkt · 16/06/2021 19:50

If sleep is a big problem, then a relatively low-level intervention is phenergan which is a drowsy antihistamine.

GPs are sometimes happy to let you try this while you're waiting for CAMHS or psychiatrist.

blissfulllife · 16/06/2021 19:56

I was told by both my daughters primary and then the secondary that she tried to attend (she managed 3 days then had a mental breakdown) that we wouldn't get an EHCP and that she'd not get a specialist placement. Because she had no behavioural problems and was academically average and on the outside looked to be coping in primary. They wouldn't take into account the 2 hours before school where she'd be sick with anxiety, nor the huge meltdowns after school from having to mask the anxiety all day. I didn't deregister her I actually got a medical note from her gp as waiting list for camhs was months and months, gp signed her off with anxiety and secondary provided online work. I applied for an EHCP myself and as she was still registered in school this triggers the LEA to appoint an educational psychiatrist and he did an in depth assessment. He really listened to her and advised she'd never cope in a mainstream secondary. We applied early December and had it all in place by April it's definitely worth going for.

New posts on this thread. Refresh page