Here some suggested organisations that offer expert advice on SN.

Please help. Does anyone have 10 yr old + with ASD and/or severe anxiety??

(47 Posts)
Anothernamechanger1 Mon 15-Aug-16 20:30:48

Ds1 is 10. Been under Camhs for a long time. He's currently seeing a physcotherapist each week. He's very bright but school (and me) have always struggled with his anger and aggression, outbursts and unpredictability. I can cope with his querks and odd tendencies etc. But this last school year he spent more time at home. Attendance board etc involved. Tried to apply ehcp but got refused. School doing what they can when he is there. We've been through a bad time his whole life. So on top of the ASD he has anxiety and the anxiety may be ASD related but may be a result of what he's been through. I don't know what to do. The paediatricians are no use. I have asked a lot of times for medication but it has been refused.

I'm currently getting him treated by a homeopath as I'm desperate. This year his latest is clothes. He will claw at his skin, clothes hurt him no matter that there are no labels, organic cotton and that he will wear the same things 24/7. Today I washed his vest he wear in bed. Resulted in massive meltdown. He ends up crying saying how he will never get a job because of his problem with clothes and that he won't have any money to pay bills. He says without my love he would be dead. He's spoken loads about wishing he was dead and Camhs know this as do school. It. Doesn't seem serious enough for them? Has anyone any experience of this??

He says he struggles to feel happy. His anxiety comes out as anger and aggression, so if he's worrying about something instead of say crying he will shout and hurt people. Everyone has told me medication is a bad idea, the side effects, how it will mess him up. He's already screwed up and he's only 10 and the hormones haven't started yet.

Please please help I'm scared and don't know what to do. There's physically nothing left out there for help for him??

Anothernamechanger1 Tue 16-Aug-16 07:28:56

Anyone?

PolterGoose Tue 16-Aug-16 08:48:59

Poor boy sad

I think a sensory trained OT would be a lot more helpful than a homeopath.

Do you know what the psychotherapist is doing and do you carry on the 'work' at home?

They might be too basic for your ds but I found Dawn Huebner's CBT workbooks 'What to do when...' really helpful. You can buy them on Amazon.

Anothernamechanger1 Tue 16-Aug-16 09:26:26

Have seen the ot and they say his sensory problems are caused by his anxiety so until his anxiety is sorted nothing they can do!! No, no 'work' from home from Camhs. I'm not allowed in the appointments although keep updated via the phone. I can hear mostly what goes on when sat outside. He mostly plays in there. I haven't seen any change in him but she's pleased with him.

I just am really stuck at a dead end.

PolterGoose Tue 16-Aug-16 09:30:08

Was that an NHS OT? Not all are sensory trained and some NHS trusts don't 'recognise' sensory problems.

Anothernamechanger1 Tue 16-Aug-16 10:00:24

Yes nhs. They seemed very good with the sensory issues, gave advice etc but nothing has helped

PolterGoose Tue 16-Aug-16 10:47:36

It's so tricky. Sensory problems do make us feel more anxious, then anxiety exacerbates the sensory problems, which make the anxiety worse and so on in a horrible spiralling vicious cycle.

I think the first step is to make sure the environment is as comfortable for him as possible, address his sensory needs as best you can, and only then can you address the thinking stuff. So, external stressors first, then internal.

Anothernamechanger1 Tue 16-Aug-16 13:06:12

I really have. Just getting him dressed some days is a nightmare.

Anothernamechanger1 Fri 19-Aug-16 15:16:05

Anyone about?

BuffySENsational Fri 19-Aug-16 15:26:59

What's up? X

Anothernamechanger1 Fri 19-Aug-16 15:31:00

Just the above really. Just back from his weekly Camhs apt. He got dressed himself fine, then when it came to leaving the house he was pulling and grabbing at the tshirt and crying, pulls it off. Changes top, then starts on the socks, crying l, grabbing saying ever thing annoys him. Once I got him out in the car he was fine like it didn't happen??

BuffySENsational Fri 19-Aug-16 16:54:09

As polter said really - you could try asking OH to refer you for a second opinion. Is he like this every time he leaves the house or just for CAMHS appointments? And does the person at CAMHS have experience of ASD? Sounds as though it may be a number of factors and for now his senses are on overload and the trigger is leaving the house.

Does he talk to you when he is calm and not under pressure? My ds1 has lovely chats with me but these are very late at night confused these chats are like stepping stones to understanding his needs. It may take time and the information may only come in bits and bobs but you will begin to see a pattern...

Once you have identified the trigger or he has told you himself then you can begin to address it.

Ds1 hates socks. Any socks. Even seamless handwoven angora socks. That's on a good day. I have no answers for us it took time and for ds1 to articulate his preference but whenever he is stressed he gets very angry putting on his socks to this day.

I have no advice and am not as articulate as polter but wanted you to know it does get easier. Eventually. Sometimes smile

Also ds1 has medication for ADHD and melatonin for ASD I was told exactly the same by others about the evils of Ritalin and the like. He was the youngest child in uk to be prescribed Equasym XL when he turned 6 and it has been instrumental in helping him concentrate begin learning to regulate his emotions. When I first asked about medicating him I asked about Valium but that was for me as by that time I was wreck grin

Medication may be right for your ds and it may not. You may have to try many different kinds and dosage to find the right one or you may be lucky and find the first to be of benifit. The o my downside for ds1 is that it curbs his appetite so by 8pm he can eat his body weight in crap confused but the benifits are much better for him. He also has Tourette's and the medication helps with intrusive thoughts for ds1. My point being you can and should do what is right for your ds and you and pay no heed to anyone who says otherwise.

Re the application for ECHP are you appealing to tribunal? X

BuffySENsational Fri 19-Aug-16 16:55:37

As polter said really - you could try asking OH to refer you for a second opinion. Is he like this every time he leaves the house or just for CAMHS appointments? And does the person at CAMHS have experience of ASD? Sounds as though it may be a number of factors and for now his senses are on overload and the trigger is leaving the house.

Does he talk to you when he is calm and not under pressure? My ds1 has lovely chats with me but these are very late at night confused these chats are like stepping stones to understanding his needs. It may take time and the information may only come in bits and bobs but you will begin to see a pattern...

Once you have identified the trigger or he has told you himself then you can begin to address it.

Ds1 hates socks. Any socks. Even seamless handwoven angora socks. That's on a good day. I have no answers for us it took time and for ds1 to articulate his preference but whenever he is stressed he gets very angry putting on his socks to this day.

I have no advice and am not as articulate as polter but wanted you to know it does get easier. Eventually. Sometimes smile

Also ds1 has medication for ADHD and melatonin for ASD I was told exactly the same by others about the evils of Ritalin and the like. He was the youngest child in uk to be prescribed Equasym XL when he turned 6 and it has been instrumental in helping him concentrate begin learning to regulate his emotions. When I first asked about medicating him I asked about Valium but that was for me as by that time I was wreck grin

Medication may be right for your ds and it may not. You may have to try many different kinds and dosage to find the right one or you may be lucky and find the first to be of benifit. The o my downside for ds1 is that it curbs his appetite so by 8pm he can eat his body weight in crap confused but the benifits are much better for him. He also has Tourette's and the medication helps with intrusive thoughts for ds1. My point being you can and should do what is right for your ds and you and pay no heed to anyone who says otherwise.

Re the application for ECHP are you appealing to tribunal? X

Anothernamechanger1 Fri 19-Aug-16 17:00:29

Thanks for replying to me. Re the ehcp the school have to have in place 3 lots of 6 week school action plus in olace to prove what they have done hasn't helped. He wasn't at school most of February to beg of July so the council said they can't even go into access him anyway which makes sense, so Jan 2017 should be able to reapply.

Socks are a nightmare he doesn't know why. Tried lots of types and he sticks to black next ones, hates them brand new hates them too old, I struggle to get it rights he doesn't know why, he just says 'everything irritates me'. I wish I could go back in time. He's always had issues with clothes... But I got round that. He has been like this with his clothes approx 9 months or so. I just don't get how one day he ups and jumps and gets dressed no mention and we are off..... Other days we don't get out the door and even for things like the cinema? School allowed him to not wear uniform (not from Sep tho) we have been under range attendance board, have only just been released from them as his attendance improved.

No one will Medicare him though? How did you get medication? Trouble is no one sees him this bad (school have) and family but not the professionals that can prescribe. He has suicidal thoughts, has threatened me with knifes and all sorts. I'm petrified of when the hormones kick in?

Anothernamechanger1 Fri 19-Aug-16 17:02:03

Sometimes (at night aswell!) he will talk and gets upset, says he wishes he was dead as he causes me so much stress, that he doesn't mean to be how he is. I hate him feeling like this but I can't stop it!

PolterGoose Fri 19-Aug-16 17:11:48

Have you posted under a different name before? If not there's another poster with similar issues (Purple something maybe??)

You can apply for an EHCP. Sadly you've been lied to about that. Please talk to IPSEA or SOSSEN ASAP. I think they might run a reduced service in the holidays.

If you're spending money on homeopathy and whatever else I still think you'd be better spending it on a decent OT. The sensory problems are having a massive impact here and need addressing. There is always a way to help, you just haven't found it yet.

Anothernamechanger1 Fri 19-Aug-16 17:38:22

Yes polter that is me!

So funding one privately then? The resources are slim to none. The ot has assessed him twice, have some strategies which he enjoyed but didn't help, so she bought the anxiety was making the sensory issues worse. Which made sense, but they can't help with his anxiety, they say that's Camhs. Ot are assessing him in September at school but that is to assess his physical issues ( co ordination and processing etc) the good thing that did come from ot was things they brought up made me think of dyslexia, so I got him privately assessed and he has been diagnosed. So that has helped his self esteem with not being 'thick' despite the fact he is academically a year ahead of peers (was but he has missed most of this school year gone so he is now 'not meeting' level)

BuffySENsational Fri 19-Aug-16 17:44:29

Again as polter SOSSEN are closed
until 5 Sep. IPSEA are running a reduced helpline (check FB page/website). NAS education are open ring them and an adviser will ring back.

You have been lied to you can appeal but I'm not sure when but look on IPSEA website under refusal to assess and that should give you an idea. Do it today. No matter what. It is very important. Do not believe anything that school or LA tell you about ECHPs and when you can apply.

Do not worry about hormones for now.And do not waste your time and money on homeopathic remedies. They will not cure your ds and probably won't help. If he has clothes that he can normally wear but at times can't bear that is his body's way of telling him (and you) that he is not able to filter his senses and is overloaded. You must remove the triggers that cause the overload.

For example ds1 hates socks but there are typed he will tolerate but I must let him put them on unstressed. So no 'hurry up and get your socks on we will be late'. At school after PE he has massive mood swings because school keep trying to rush him iyswim

Ds1 used to say some really scary things when he was younger. Don't dismiss what he says out of hand but also don't be too alarmed either. My ds1 is very literal and his feeling like slitting his throat until all his blood is spilt and he is dead really means I feel a bit sad. But that's my ds1 and I wouldn't have him any other way grin

PolterGoose Fri 19-Aug-16 18:05:38

I suddenly thought it might be the same poster. I pretty much ran out of ideas to suggest and don't know what to say now. I do think maybe an OT coming to your home and going through practical things and changes you could make would help. Often we thrill we've done everything but really we've only done what we know about! There's always more to try and ways to adapt what you've tried already.

Is your ds actually naked all the time at home? Sometimes parents say things like 'my child won't wear clothes' when actually they mean 'my child won't wear what I think they should wear and what society says they should wear'. You're saying he won't get dressed so either he's naked or there are some things he will wear. 'Getting dressed' and 'clothes' can mean different things to different people.

PolterGoose Fri 19-Aug-16 18:06:21

think not thrill blush

Anothernamechanger1 Fri 19-Aug-16 18:08:36

This is the thing though, I don't know what the triggers are other than stress and anxiety! I can't see anything specific at all/

He's got better in that he said one day this week when we were meant to go to the skate park 'mum I think I really need to stay in today' which we did. I think he knew he was a bit volatile that day. I listen when he says that and I praise that he was able to tell me and I could then understand.

He worries about me being taken away from him I know that, but other then the constant reassurance I'm here I can't do anything else. I had to stop work because of his lack of attendance. He is talking positively about going back in September which is good.

I'm at a loss as to know what the exact problem is getting dressed and leaving the house. Iv spend hundreds of pounds on clothes, they are sat in his wardrobe. He tries them on and liked them so I washed and tumble dry them then he won't wear them despite he hates 'new clothes '. All he wears are particularly joggers (non cuffed) and tahirt. For the last 6 months. That's it. But some days that isn't good enough! He won't leave the house in pjs which is fair enough. I'm on my own with them both and poor ds2 gets a lot of the brunt and misses out.

Anothernamechanger1 Fri 19-Aug-16 18:11:14

I have given up expecting him to wear what he should, he wears what Iv just described every where even school. Sometime the tshirt to bed and then the next day! He won't sit naked no, in pjs if not dressed. The ot assessed him at her place of work and then had to come to house as I couldn't get him there. Showed me a lot of things to do, deep pressure massage, Thera putty, giving suggestions of things to help but they don't work?

PolterGoose Fri 19-Aug-16 18:16:46

Right, so he does get dressed. Joggers and t-shirts are all my ds wears, it's fine.

My ds is very demand avoidant so most of the sensory 'work' has had to be done by stealth. Game playing, me doing it and him joining in, making it a challenge or competition. Whatever it takes. But it never looks like 'work'.

BuffySENsational Fri 19-Aug-16 18:22:42

Is it not good enough for him or you re the T shirt and jogging bottoms? If that's what he likes to wear then let him. ds1 hates coats so he has big thick hoodies instead. He can't bear the swishing noise. The triggers are there you just don't know what to look for and that's where an OH coming to you home could help.

Ds1 can't cope with lots of background noise for instance so I can't have a chat with him if the tv/radio is on or he wants to read.

The more he can talk to you about it and normalise his feelings then that can only benefit him. And will help teach him that communication can be helpful. You will get there.

It took me years to be able to identify triggers as soon as I did they changed and so it began. They will elvove and wax and wain learn to go with them instead of against.

ds1 can't bear the texture of meat yet absolutely loves hotdogs. He has hotdogs at least 3 times a week and his staple of his beloved plain pasta with cheese the rest for dinner.

Keep talking and keep the lines of communication open between you and eventually you will learn to 'see' things through his eyes and it will get easier X

Anothernamechanger1 Fri 19-Aug-16 18:27:08

But this is the problem, one day the tshirt and joggers are fine, the next everything is irritating him and he will pull and claw at said tahirt and joggers. This is what I can't understand. It feels like he's doing it deliberately because he can't be bothered to go out. Last Camhs apt he was like this, wouldn't put anything on his feet, for slippers on him and to the car park but wouldn't get out as 'everyone will laugh' so I went in and got the Camhs physcotherapist and he wouldn't get out of the car for her either. So we went home. Today he got himself dressed, no issues at all. Knew when we were leaving. Was sat in joggers and tahirt. Comes to leaving the house and it starts again, clawing and moaning. I manage to get him in the car and to his apt as if nothing happened! He then sat in the same clothes all afternoon that he was clawing at earlier!

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