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Is it time to medicate dd (ASD)?

8 replies

Lovemusic33 · 21/10/2022 12:00

I have always been against medicating dd, up until now her behaviours have been pretty easy to manage and meltdowns have not been that often.

DD is 16 and in the last few months there’s been a lot of changes to her routine including starting college and her sister moving out (uni), she seems to have become super sensitive to many things, the weather, dinner being late, the car making noises, things not going her way and many other things. Meltdowns seem to be a daily occurrence and it’s making it impossible for me to take her anywhere in my own. Yesterday she almost ran off in a car park because the van parked next to us make a beeping sound, dd started shouting and people were staring. It’s so much harder now she’s adult size, I can no longer scoop her up or bundle her back into the car 😢. I feel like the worlds closing in on us, I can no longer go places, can’t visit people or make any plans to do anything fun. She refuses to do most things but also has a meltdown if we stay at home.
I am awaiting more help from social services and respite (hopefully over night respite), I am a single parent with almost no help from her father or my family.

I am now wondering if medication could be an option to calm her a little? She seems to be on edge all the time, especially in the car and when we are out. I don’t even know what the options would be or how I go about getting anything for her? She’s not been under a paediatrician for 5 years so would need a referral which could take ages. I am scared that she’s getting close to a breakdown and I won’t be able to help her, that she may harm herself.

What are the options with medication? Has anyone else’s teen been put in meds for ASD and anxiety? I just want my chilled out dd back.

OP posts:
Thatsnotmycar · 22/10/2022 10:29

You would need a referral to CAMHS. Is DD receiving any therapies? By medication do you mean antidepressants? Or antipsychotics (which are sometimes used in those with autism and challenging behaviour)?

Lovemusic33 · 22/10/2022 15:35

She’s not receiving any therapy, she’s just moved from a SEN school (where she had therapy on site) to a SEN base at a college.

I am unsure what medication would help. I have worked in mental health myself and am aware of antipsychotics and antidepressants, this is probably why I have always wanted to keep her off medication (I have seen the side effects they can cause). I am just worried that she may harm herself during a meltdown and this is becoming a lot more often. In the past she has hit herself and banged her head against things, she has also shouted “I want to die” several times. She’s not very verbal so it’s very hard to work out what is wrong and she can’t tell me what helps. I often feel I am making the situation worse.

She loves routine and whilst at school/college she seems fine it weekends and holidays (which are now longer) are really hard work. She’s also only doing 4 days at college. I did try and get her placed in a residential college but was told her needs were not high enough (by LA ) and then the college said her needs were too high and refused a place as a day student 😬.

I struggle to keep a tight routine at home as I am also ND (have ASD), I do try but she seems to hate everything I arrange to do unless it involves spending money on Lego. When we are at home she cries that’s she’s bored and wants to go out…when I suggest places to go she’s says “no”.

OP posts:
Thatsnotmycar · 22/10/2022 18:27

If the EHCP doesn’t include therapies you need an early review as it is inadequate. I would try therapies before medication, CAMHS are also likely to take this view as medication is usually a last resort. NICE guidelines state antidepressants should only be used alongside therapy.

Does DD have other provision for the 5th day? She should. Is the residential college wholly independent? If not, did you appeal the LA’s refusal to name a residential SS? If it is wholly independent have you looked at alternatives?

Lovemusic33 · 22/10/2022 20:09

No provision for the 5th day, college have advised ‘work experience’ which is laughable as she needs 1:1 when not in a SEN secure setting, she takes anything that’s not nailed down and still puts things in her mouth, she has limited danger awareness.

She did have OT on her EHCP but this has been changed in various ways over the last few years because school would not provide individual therapy. She does have things in place and in her EHCP to help regulate her sensory issues. I didn’t want her to attend this placement, I tried hard to get her into somewhere more suitable but LA took DD’s views into consideration and she wanted to go here (because it’s somewhere she had visited with school, most of her class mates were going). Since she’s been there she’s been unsettled at home and anxious.

The residential was independent, we visited twice and was told it was perfect for dd, it was our first choice but we were told residential wasn’t possible due to it being too close to home so we asked for a day placement (only 10% of the students are residential) but then the college said they couldn’t take her as they felt it was to open and she was at risk of absconding despite the fact it’s a secure college for children with high needs. Because the college turned her down I couldn’t appeal it. There was one other choice but dd didn’t like it so LA went with the cheapest option. She has been put on a ‘preparation for life and work’ course but dd likes a challenge, she is pretty academic and managed to get level 5 in maths GCSE, college are not really giving her anything challenging to do, they have told me they will reassess the situation after a year to see if she can access another course such as Art or Maths. Art is on her EHCP as one of the things she needs to access for her sensory issues.

OP posts:
Lovemusic33 · 22/10/2022 20:13

I have tried to get her referred back to OT as did school but because she’s at school/college in a different county it’s been passed back and forth to which county she should be seen in, the OT here won’t go over to the next county to assess her at school/college and the OT in the county she’s at college in say they can’t see her as she lives in the neighbouring county.

She has had OT on and off since she was 2 years old but hasn’t been seen for 5 years.

OP posts:
Thatsnotmycar · 22/10/2022 20:31

I know the residential is independent, but is it wholly independent or a s.41 independent? Telling you residential wasn’t an option as it was too close to home is incorrect. Have you looked at any other specialist placements other than those 2?

If art is specified and quantified you can enforce it if it isn’t being provided. From your posts I fear it is vague and woolly though? Same with individual OT. If it was specified and quantified in F it must be provided regardless of what the school normally do.

As DD has an EHCP you don’t need a normal OT referral. You need to get OT included in section F then it must be provided. If the NHS can’t or won’t the LA must commission independent provision. Living in and going to school/college in different counties doesn’t change that.

If needed to get OT included in F to begin with you can formally ask for a reassessment of needs and then request an OT assessment as part of that. Again, if the NHS can’t or won’t assess within the statutory timescales the LA must commission an independent assessment. The alternative is to ask for an early review then appeal getting independent assessments if necessary. However, with an early review there isn’t the right of appeal if the LA refuse like there is with requesting a reassessment of needs.

What about SALT and MH therapies?

You need 5th day provision in F. Whether that is supported work experience or something else.

The EHCP as it is isn’t meeting DD’s needs, and the first step should be to improve that.

Does DD have capacity?

Lovemusic33 · 22/10/2022 20:46

The residential said they only look as residential placement if over an hour away from home, we are literally 50 minutes away, they said there are expectations and that Dd might qualify, they seemed keen in offering her a placement so I went back with dd a 2nd time and dd liked it there, they offered A levels and some BTEC courses and had onsite therapists (OT, SALT and mental health), we saw several children there that were obviously more severe than dd. We thought she would be offered a place so it was a complete shock when they said they could not meet her needs.

We didn’t view any other residential’s as LA were not supportive, we did visit all other options within a hours drive from home, we live pretty rural and there are not many options. LA kept saying that they will consider what dd wants even though school supported me in saying she doesn’t have capacity.

I received her EHCP (reviewed) a couple weeks ago, it was full of mistakes including who dd lives with (I have been parenting her alone for 6 years), I have emailed her case worker to outline all the mistakes and haven’t heard anything back. I will be meeting with college before Christmas to talk about how things are going so I can ask them then about the things that are not being met on her EHCP.

OP posts:
Thatsnotmycar · 22/10/2022 21:03

Do look at whether the college is a s.41 independent or not. Unless the residential college is wholly independent rather than s.41 they don’t get to decide whether to admit DD and make rules such as residential only if 1hr+ away. The LA can name them even if they object. If it’s in the EHCP they must admit. However, if it is wholly independent you can’t force them to.

The LA aren’t going to be supportive of residential, it costs them too much. But it is possible to secure residential via appeal even if the LA don’t agree. Do look other residential options further afield.

If DD doesn’t have capacity you should look at Deputyship.

If you received the amended EHCP a couple of weeks ago that makes things easier as you are still within the appeal window. Therefore I would appeal now and seek independent reports. If you aren’t eligible for legal aid and can’t afford assessments contact Parents in Need as they can sometimes help. Don’t wait to meet with the college before Christmas as a) you will then be out of time for appealing or right on the deadline, and b) the length of time from submitting an appeal to the hearing is ever growing so waiting delays DD receiving the support she needs.

Also don’t wait until then to enforce the things specified and quantified in the EHCP that aren’t being provided. That will be a whole term DD isn’t receiving the correct provision. Email the head of the college, and also Director of Children’s Services at the LA informing them, reminding them they are ultimately responsible and if the situation persists you will be forced to begin judicial review proceedings.

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