How do I get some support?

[Usernumber737373726363]

DS is autistic, diagnosed aged 4, now he’s 12. We’ve had very little professional guidance since diagnosis. Pretty much signed off everything after diagnosis given.

he has moderate learning difficulties, anxiety, he displays both ritualistic and repetitive behaviours, he’s easier bored or dysregulated and has sensory issues. I believe he could have ADHD too.

things are difficult at home. I think a mix of pre teen hormones and the potential start of puberty is adding to it too.

his anxiety is so high, his rituals are high and effect him and the rest of us as we have to certain things for him to be satisfied too. It could be as simple as getting in and out the car several times or in and out the door in and out of bed. If he doesn’t do it the right way he’ll scream and scream. We have to things in a certain way as parents too. We are treading on egg shells. It’s awful for ds but also us. Our younger child is s nervous wreck worried she’ll put a foot wrong. I believe he could have some called of avoidance disorder, he always needs to be in control. He doesn’t see us as his parents and leant respect boundaries etc.

he is displaying challenging behaviour, lashing out and hitting me and my partner - not his bio dad but been around since he was tiny. Screaming at us and screaming at his sister.

I believe he is in the wrong school, we are working on changing to a Sen school. But in the meantime we have a problem now. He masks at school and they see a very watered down version of him at school. He is probably exhausted from masking. I wish he was more his true self st school so the school would get an idea of our issues at home.

my patience is running very thin and I have my own MH issues. I feel I’m at breaking point and I get angry quickly - which I know isn’t helping but I remain calm for so long then I just reach a point I can’t do it. I’m only human. He was awful to his sister today so I screamed at him. I shouldn’t have but sometimes he doesn’t respond to me trying to reason with him.

sometimes I feel like he likes the confrontation and thrives on it.

I have reached out. The school don’t reply to my emails half the time, tried doctors who have sent my request onto camhs but we have been turned down by them before, went through my local help hub who couldn’t offer much.

would an OT assessment be beneficial does anyone know? Hasn’t seen one since he was 4! we could go private if needed.

sometimes I feel like the worst mother in the world, to both my kids.

Does he have an EHCP?

Presumably DS has an EHCP given you are considering SS? If so, are there no therapies e.g. OT, SALT, MH therapies in there?


Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

Have you considered PDA? If you haven’t already look at Yvonne Newbold’s resources and Ross Greene’s The Explosive Child book.


For DD, contacting your local young carers service and Sibs may be helpful.


Where are you with having the EHCP amended? If the school are ignoring you escalate to the HT and governors.

Thanks both. Yes he does have an ehcp but my LA are p**s poor and have some serious delays.

I am trying to push for a social care/carers assessment. No one seems to want to help. I’ve cried out for help so much and no one could say I haven’t tried.

we are under no professionals at present. We are thinking of paying for a private OT to come and assess him at school and home as an urgent case. He was signed off SALT a couple years ago, we are awaiting on a camhs referral being accepted or not.

I think he could have PDA.

EHCP last reviewed summer 2022 and still not been amended by LA. They have had serious staff turn over this year due to staff leaving due to stress and being overworked. I’ve spoke to the school and our LA and have suggested review is done sooner, likely before his EHCP is amended from last year.

School are poor at communicating and getting back to me.

If the EHCP hasn’t been amended following the previous AR or the LA haven’t formally told you they aren’t going to amend then you need to email the Director of Children’s Services threatening judicial review as they are in breach of the statutory timescales. If that doesn’t work contact SOSSEN for help with a pre-action letter.

I wouldn’t bother with an early review. Personally I would either:
a) push for the LA to amend or say they aren’t going to amend following the previous AR so you get the right of appeal and then appeal and seek independent assessments.
Or
b) request a reassessment of needs. Then if the LA agree to a reassessment ask for SALT, OT and MH assessments - you wouldn’t need to sit on the waiting lists this way.

If the LA are refusing social care assessments this can also be pursued via judicial review.


Have you escalated the lack of communication from school right through to the governors?

his anxiety is so high, his rituals are high and effect him and the rest of us as we have to certain things for him to be satisfied too. It could be as simple as getting in and out the car several times or in and out the door in and out of bed. If he doesn’t do it the right way he’ll scream and scream.

From this part of what you wrote, I was reminded of this talk I listened to recently which I found very informative, looking at how to disentangle which behaviours derive more from OCD rather than ASD and thus which ones the family should avoid accommodating
It may not be new to you, but it helped reinforce some things for me so perhaps there will be a useful nugget in there.

Best of luck.