Lost as to what to do with ASD/ADHD son

[AngelinaJolie21]

So, my son is 11 been diagnosed with ASD and ADHD, is currently not in school because he gets so stressed and just can't cope and then acts out and gets into trouble. Over the past year, he's really retreated into himself to the point that he now just sits on his computer all day. It's also got to the point where I have to be really careful who I invite over because so many people feel entitled to offer their opinion, usually along the lines of spotting the ways in which we, as parents, have caused this. It can also get awkward with other kids because he just talks at them etc. etc. so I tend to be really careful around that too. So, once we were a gregarious fun-loving household and now I feel totally isolated and alone. People keep editing themselves out of our lives - or I edit them out because of the things they say. I literally feel as if I have no life, don't know who I am anymore. I've had so much to deal with that I wonder if I have trauma of my own. We are trying to re-engage him with schooling, most likely a special school but because he's not straightforwardly autistic - he has the ADHD/behaviour component and also trauma has been mentioned because of negative school experiences - he needs to go to a special school that deals with behavioural problems. However, I feel he's not at that level - he's not violent etc, he's just a quiet, geeky child, who will refuse to cooperate by sitting in the corridor with his arms crossed - and I'm really worried about what the experience of that type of special school (ie school for kids who've been excluded) would be like for him. He's also very bright and I worry that he would get a good education. There was also some talk about the local authority making him homeschooled - but I feel that's a lot on me. I'm not a teacher, not a SENCO and I want a life too. Basically, I suppose what I'm asking is has anyone else been in a similar situation. Got stories to share? Words of encouragement? Anyone homeschooled and actually found it really positive etc. etc. I just want to know that we'll all be happy again at some point.

Is your son on roll at a state school? The LA have a legal obligation to help after 15 days not in school. They can provide tutors to the home ....

Keep a note book - you are going to have to be crystal clear on these dates for the EHCP - as LA are rubbish. What week you on for your EHCP?

Did you list your parent preferred schools on the EHCP?

Everything needs to be in an email - for trails.

Has your child been assessed with an EP for the EHCP?

You can apply for dla / carers

Keep ringing that dr - to get in contact with cahms - they are crap - unless your on suicide list - but they can provide adhds meds and they can even provide anxiety meds too .... but at least you might as well be on a waiting list than not ....

Good luck not easy

I do like this book

The Educator’s Experience of Pathological Demand Avoidance: An Illustrated Guide to Pathological Demand Avoidance and Learning

Also, Eliza frickers book - home life of pda or something.

She is good on instragram - missing the mark. She has some good podcasts. Listen to them - free and about schools.

Not sure if your child is pda or not - but with his anxiety maybe PDA strategies will help.... if he's demand avoidant and suffering with anxiety.

Good luck x

I didn’t comment on any individual case, did I? I posted about the law. The law is the same regardless of what LA you live in. I have helped hundreds of parents across the country and whilst LAs often think their own local policies trump the law, they don’t.

Can you also please quote where I said you made it up? You can’t, because I didn’t! I am amazed SOSSEN stated a letter from CAMHS/a psychiatrist stating the pupil is unfit for school is required, because that isn’t the law. I didn’t say they didn’t tell you that! Neither did I ‘minimise’ your experience.

We are currently looking at Kings Interhigh online school for autistic DD1.

You are very good at quoting legislation, however in my, and many other cases, it seems that LAs are very good at not adhering to the law or interpret it in a way that is not in the spirit of which it was written (in this area in particular), that is until they are ordered to, either by a decision at tribunal or judicial review unfortunately. LAs play for time and they do this well and for financial reasons. Not helpful when your DC is struggling in the meantime. Being right in your legal stance means nothing until you have the opportunity to hold the LA to account after literally months of waiting for a hearing date.
Your post did read like you were disbelieving although you didn’t overtly write so.
You come across as very dismissive in your posts at times which is minimising.
I’m leaving it there. I’m here to help when I can, to support and also for support. I’m not here to disagree and for bad feeling. Have a lovely day and I’d be really grateful if you could please leave it here also.

If I meant I disbelieved you or thought you made it up I would have said so using words that actually meant I thought made it up or disbelieved you such as “I don’t believe you” or “that’s made up”. Instead I used “amazed”. The definition of “amazed” from google is “greatly surprised; astonished”. Absolutely not “made up”. I have not minimised you at all. No one is forcing you to reply to me, but I absolutely will reply to someone stating I have said something I haven’t.

I did say LAs often act unlawfully, but the law applies equally. Parents should be supported to challenge unlawful practices rather than accept them. It does not need to take months for JR. The majority get no further than a pre-action letter. And one can ask for an interim relief. The OP can see that on this SOSSEN page under the ‘isn’t JR slow’ FAQ.

“but I absolutely will reply to someone stating I have said something I haven’t.”

I didn’t ‘state’ anything that you had said, it’s how your posts read (at least to me) that I picked up on. This isn’t helping anyone, so seriously, let’s leave it. Agree to disagree, whatever. It’s really not necessary. I’m stressed and exhausted like most people will be on this thread so maybe things get heated when they really shouldn’t. We’re all fighting ‘the system’ and advocating for our kids. We don’t need to be locking horns on here too.

Again, no one is forcing you to reply. I have not tagged or used the quote function. But, I will reply when you say I have posted something I haven’t. You stated ”Your post reads like I’m making this all up!” when I stated no such thing. If I meant I thought you made it up/disbelieved you I would have said so, but I didn’t.

thanks for all the help. EHCP still being drafted - next week apparently. and then we will name schools i believe once draft done? hes not on roll anywhere, he was in private schools. they were beyond crap in the things they did to our child - and we've been recommended to get a trauma assessment done for him as ptsd can exacerbate neurodivergence apparently and it would be helpful in schools choice. Anyone know someone who can do trauma assessments in London?

Dr Richard Soppitt isn’t in London, but he’s not too far away and is excellent, especially if you have to appeal the EHCP. For a time he closed his waiting list, but he may have opened it again now. Alternatively, Maudsley has an excellent trauma team, some of whom undertake private work.

Therapies can be included in the EHCP, although you may have to appeal. That way DC can have therapies they wouldn’t otherwise receive, for longer/more frequently and without the need to sit on the normal waiting lists.

I’m so sorry to read your last post OP, it sounds like he had such an awful time.
Upthread you asked about a medication review. GPs usually can only prescribe on a repeat prescription basis once a psychiatrist has prescribed. (Or other medical professional at CAMHS if it’s ADHD medication) My DS has all of his medication reviews at CAMHS. It may be worth being referred to CAMHS or you can refer him directly yourself.
With regards the EHCP, I wonder how much input you’ve had from an Educational Psychologist? And if so have they worked with your DS much? Ed Psychologists tend to be very vague on EHCP strategies and provision unfortunately, particularly if they haven’t had previous engagement. It could definitely be also worth trying to get a private Ed Psychologist. (Although I know it’s difficult because they are all so busy at the moment with the high demand and they’re also not cheap). This is because, you’ll have a greater chance of specialist provision, this way. CAMHS were great with our application and supported lots, however their contributions can only go in the ‘health’ part of the EHCP which is in their remit. This was be then most likely be the case for you also if you have a trauma assessment.
We had to go back to the Ed Psychologist and ask her to look again at what she’d recommended in section F as SOSSEN had advised us to. (They offer a draft EHCP checking service) which she then did and it was much better. Following this DS’ mainstream school conceded that they can’t meet need.
Good luck with everything 💐

If you are West London see if you can go look at The Rise School in Feltham.
In you go the private route then Portland Place have a really interesting Hybrid model which takes the pressure off home schooling.

DS2 has ADHD and is autistic. His ADHD is now medicated, private consultant through PUK and shared care agreement so GP issues prescriptions. He has an EHCP.

He is high achieving - especially maths etc. Brick school at secondary was not the right choice. It focused on his weaknesses rather than his strengths. It seemed to go out of its way to ignore his strengths. Eg he had to be in bottom set to get support when the issue was not understanding. This is not good for self esteem.

His EHCP funded internet school - kings interhigh - the mainstream one. He did his maths iGCSE 2 years early and got A*. There is no better way of ignoring stimming or fidgeting (it's invisible and has no impact on other pupils) and rewarding achievement. He could practice social skills online.

He is now (after 11 GCSEs) at 6th form and thriving. He's doing maths, further maths and physics and is on course for A* across the board. But more than that he is happy and his social skills have improved exponentially. I think that is because he didn't spend 5 years feeling bad about himself.

I also have an older son whose indi specialist school failed at 15. He's barely left the house since and 7 years later is lost. Different profile but I wonder how different things may have been for him.

Hope you don’t mind me reviving this thread @AngelinaJolie21 and really hope that you and your son have had a good start to the academic year. We find ourselves in a similar place to you with our Y7 DD (no ADHD though AFAIK) and are near West London (Richmond borough). I’ve made a note of some of the suggestions for schools/online provision upthread but if you came across any other good options I’d be really grateful for further ideas too. (Parental application for EHCP in anticipation of all this was declined in Y6 - following a successful tribunal to get her assessed - but I think we might be needing to reapply soon at this rate.)

Is he delayed with the school curiculum? If he is then you should apply through your council website for EHCP statement asap and he will have a dedicated assistant during the lessons.
When you say he has been diagnosed do you mean he was diagnosed with CAMHS? If not ask school to apply.
If he is not violent and quiet boy then it means that he will manage in a normal school if you get him EHCP

Btw there is a SEN forum here on mumsnet.
People keep editing themselves out of our livesWhere do you live, where are the people so detached from the reality? ASD/ADHD diagnosis is very common and many kids have mixed diagnosis like that. In my son's class there are 3 kids that have a dedicated assistant through EHCP, and few kids that are on SEN monitoring but without assistant. In the wider school there are kids who not only need assistant during the lessons but they are followed also during the break because they are violent. Nobody ostracises them and play with them with caution.Move.

Hi Kat - no we didn't get sorted, I'm still fighting with local authority but i do feel more positive. I can see light at the end of the tunnel. He's been offered a school place at least and just trying to get that named - LA are being a nightmare. But he is spending a lot of time in his bedroom currently although seems pretty happy and engaged, just doesn't go out much. He seems a lot happier actually following a year of not being in school. And some of his old friends are coming back, so that's positive. The school we're hoping to have named seems good but we'll have to see - slightly worried at the thought a good special school isn't the holy grail we're hoping to be.
In terms of schools, most of the ones I knew are special schools. There's Roehampton Gate or Wemms near you I think.....have you checked them out?

And thank you redfluffypanda. Will check out the SEN board! And yes, we moved. And life is SO much better. Surrounded by lovely people now - which is an absolute god send. So all in life has turned a corner...

@AngelinaJolie21 thanks for getting back to me. I'm glad things are sounding more positive generally, although I imagine frustrating for you that it is taking so long and still not entirely resolved.

Thanks for the school suggestions. I've read some dodgy reviews of Roehampton Gate that make me think best to steer clear. A friend's daughter started at Wemm's in September and it seems to be going pretty well so I might take a proper look at it myself. I also attended an open evening for King's InterHigh (online school) last night and it seemed great. Ultimately DD is keen to stay on at her current school but the anxiety (and all the associated ailments) is just too much for her a lot of the time.

Oh that’s interesting re Roehampton Gate. I went to look around and liked the staff but had some suspicions re bullying so interesting re dodgy reviews! Good luck with it!