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.

I have a similar child of a similar age although at the moment he is engaging OK with school, though he would love to be at home on his computer all day! But I get your concerns about him being in a special school where the behaviour could be disruptive.

We home educated for a while (he started school later than most). We didn't get any help from the LA to do it. I found it very isolating as the home ed community near us was very cliquey and none of the kids wanted to play with my child and the parents would support them in that "she doesn't have to pay with him if she doesn't want to" etc which I guess it's fair enough but not fun for us. The parents tended to treat me like the people you've described in your OP too - convinced if I did things "better" (like they had...) we wouldn't have these problems. We get the same attitude from family too. I think it's because my child is very chatty, eloquent and smart - so when he only eats 3 things or has a meltdown over things not going to plan they assume it's just because he's "spoilt" - they don't get it.

I think if the LA suggest home school, rather than you choosing it (as we did) they have to provide tutors. I know of a family where this is the case, because they couldn't provide a school place suitable for him. But we are in semi rural Scotland, it may be different in areas where there is a bigger population age thus range of nearby schools.

The LA can’t force you to EHE. EOTAS is a possibility though if attending school is inappropriate, that can sometimes look like home education, but the LA retain responsibility and can’t compel you to deliver or organise it.

Does DS already have an EHCP?

Is the LA providing education whilst a longer term plan is put in place? They should be.

I really feel for you op, having a child that doesn't fit into the normal school system is just awful.

I would recommend joining 'Not Fine In School', they have a Facebook page and website.

You will be surprised how many other families are in the same position.

Also, as others have said, you cannot be made to home educate, so hold the line if that isn't something you want to do.

As others have said, if the LA acknowledge that there is no suitable school for your son then they must provide alternative education, usually by sending tutors out. This is often called EOTAS (Education Other Than At School), but different LAs may have their own names for it. I take it your son has missed a lot of school? What has the LA proposed to do about it?

If you prefer to provide the education yourself - or if you don't succeed in making the LA provide what you believe your son needs, and you decide to take it on yourself instead - that is called Elective Home Education or EHE, or sometimes just "home education". If you want to explore the possibility of EHE, you might like to join some online forums to get a better idea what resources are available and the different approaches you can consider. It's also well worth making contact with your local home ed community to see what's on offer in terms of social and educational activities, which might help you decide whether to try it.

In communicating with the LA it is important to distinguish between the two, so everyone is on the same page and it is clear whether you are expecting the LA to provide the education or not.

I've home educated my kids (now 23 and 16) from choice all the way through and have found it a great fit socially, especially for the younger one who has special needs. A disproportionately high number of home educated kids have SEN. Surveys of parents suggest that unmet special needs have recently overtaken unresolved bullying as the top reason for withdrawing children from school.

Among my children's friends, most either have special needs of one sort or another, or have a sibling who does. So we find the home ed community "gets it" better than most people. That isn't to say that all groups have been suitable for my daughter or that everyone has been brilliant, but we haven't had any trouble finding people we get along with. I do live in an urban area with a very active home ed community, so it's easy to pick and choose.

I dDont know where in the country you are but some areas have some different types of educational provision such as Wemms Wemms.co.uk
or odyssey school in Highgate which is tiny or there are also Red Balloon learner centres. You would have to pay unless it was named on a EHCP

My DS (15) has ASC, with strong traits of ADHD (awaiting diagnosis). He also has emotional and social needs, depression and anxiety.
His mainstream school have conceded that that can’t meet need and comply with section F of EHCP. However, specialist schools are few and far between and our two closest specialist schools aren’t section 41 and are at full capacity so don’t have to take him. We’re now feeling stuck like you.
If you he has an EHCP then a specialist school is an option, although many are oversubscribed. The NAS, have voluntary surrendered their section 41 so they can control their admissions more. There just isn’t enough specialist provision out there. Especially in the North.
In our case, the LA are consulting all other schools in the area, the thought being we can accept the best offer of support if one or more can meet need along with significant Nudge Education support which is through alternative provision. We are getting a personal budget instead of a band funding.
EOTAS will only be given if all mainstream schools have been consulted in the LA and none can meet need, or if you can get an unfit for school letter from CAMHS or private psychiatrist. (Advice given to me recently). The info is that EOTAS has to kick in after 15 days (not consecutive) of the student not being able to attend school. However, it’s not quite as straightforward as you’d think or as the law states. Many cases end up at Judicial Review.
If you don’t have an EHCP for your DS then this is where I’d start.

For EOTAS via an EHCP, you only have to prove it would be inappropriate for the provision to be made in a school. All MS do not need to be consulted and an unfit for school letter is not essential - they may be your LA’s unlawful policies, but it isn’t the legal threshold.

It isn’t the legal threshold for EOTAS via s.19 of the Education Act 1996 either. Provision should begin as soon as it becomes clear 15 days will be missed, the days don’t need to have already been missed.

My son has a very similar profile - autistic, ADHD, bright. He struggles hugely in a mainstream setting, but he is actually overcompliant - does exactly what he is told, but internalises all the emotion and overwhelm, which has had a disastrous impact on his mental health.
It has taken 2 years for him to be ready to go back to school, and for us to get an accurate and useful EHCP. He has been at home, following his own interests and recovering from burnout. He is still highly anxious, situationally mute (so can't speak to anyone outside the home), and has a long way to go. But he will start attending an independent special school in September, where there is a very similar peer group, and a huge amount of therapeutic input and support.
Feel free to message me if you'd like any info about our journey, what schools are available, etc.

Following.

It’s so hard.

Is he medicated with his adhd?

We are in a very similar but slightly different situation.

Life is not easy. But your doing an amazing job 👍 keep going and fighting for your boy . it can be soul destroying at times

School isnt everything. What does your child think? What's his views? He might know best ....

EHCP?

Try to do something that makes you happy on a daily basis - even the small stuff which takes 5 mins .... just something for you to keep going and take a break from the sen world.

Which county you in? There are some fab support what's app group that all the mummies text to keep going... have you tried to find a local sen group on Facebook?

Does your boy enjoy anything- bike rides - board games - trips to the corner shop - supermarket to buy ingredients to bake? Something to keep on ticking. Keep going it's hard but ride the wave ..... 👍

Biggest tip is to work with him and find out his preferred ways of learning, what stresses him, what he is passionate about, and then use this as ways to connect and support him. ADHD can mean you thrive, if you are passionate about what you are doing. If you hate it, you'll avoid it any way you can. Be open and receptive, and above all, listen to him.

DD has ASD - for her Private School worked. When she joined class sizes were smaller and the school really bent over backwards to support her including offering up huge bursaries. If there are some local to you, it might help to talk to them if you think he could pass the enterence exam.

I have looked at some specialist autism schools and many do cater predominantly for kids who have been out of school for a while, so I’d look at your nearest ones - list them and go to their open days and get a feel for them. Be prepared to look at a lot of options. And probe deeply into how they help kids, as some I feel are so over accommodating that kids can opt out of learning a bit too much imho. But you see how your child might fit, if he’s sensitive then choose one that isn’t too dominated with others who might overwhelm him. It’s a bit of a slog but you will pick up all kinds of advice from other parents along the way.

Thank you for all the words and advice. We're in West London, and EHCP is going to be issued any day now, we've been told. No medication currently - as that's also difficult to get an appointment for, plus we tried for a few weeks and he really hated taking it so we stopped. I was hoping that the EHCP was going to be the light at the end of the tunnel, but then you hear stories of tribunals and councils still wanting them to go to the local school which I feel would be far too busy and overwhelming for him to learn. My son says he wants to be home educated but I also sense that he'd like to be with friends in school, as he does enjoy his friends. Currently, we've been unschooling and allowing him to follow his interests, which has in some ways made him thrive (even though he's indoors all day he's SO busy on his computer and socially connecting with people through it) but I find the idea of just allowing him to pursue his own interests - ie self-directed learning - really daunting. What if he never learned anything? What if he never got off his computer? But then equally trying to make him learn stuff he doesn't want to do is an absolute nightmare. And so far him being at home is isolating for me, and a little depressing. But perhaps I do need to start getting involved in some home ed groups with him and start getting him out there again.

I can’t help with most of this but just wanted to address the ‘fun all gone’ thing, because we were hit with this, with screens being all that there was thing. If he hasn’t people outside the house, you need to work on making your house the place to be, if even if it’s just for yourselves. Remember when he was a toddler and you had things planned like baking, reading, board games etc? We began to think like that- board game nights, family movies, day trips out to unusual locations for walks , trips to the zoo, planting stuff. Sit with him to play or watch Minecraft or fortnite . Just try and make life more enjoyable for you all including his favourite meals or treats. Also I know it’s so hard but try and let people in. If they blame or go on about it just nod along but get off the subject but if they add any value to your child’s life it’s good that he starts to interact with others (from a person who deals with a house with just my mum and db who get no visitors now and are extremely isolated- db has AS and talks to himself (fine but it gets worse the less he sees any other people).
I can’t help on the school but I do had a friend who totally changed her opinion on sending her son to a fully sn school when she didn’t think her son needed it- the teaching and opportunities there are GIGANTIC compared the the other school she wanted him to go to because she saw it as more normal’. Ironically he wanted to go there just because he thought the building was nicer!!!! In the nicest possible way maybe your son needs that school, maybe he doesn’t but open up that mind!! Best of best of luck op x

Yes, thank you! That's helpful..

My advice OP is to check section F of EHCP is SMART. It ideally needs to specify small group teaching to unlock the funding needed for specialist provision.
DS’ states this but we still can’t find anywhere that has space to accommodate him.
Although @ThomasWasTortured is right in their post, it’s not quite as simple in “that’s unlawful” and the LA don’t have to consult all mainstream schools. They absolutely don’t but they will definitely put this hurdle up. I’m living this at the moment! I’m getting help from SOSSEN and SENDIASS it was SOSSEN who advised about the unfit for school letter and they can also offer legal assistance. The local authority will act unlawfully at pretty much every step to protect their finances. They don’t have the money or resources so I just need to let you know of the reality of getting EOTAS sorted nowadays. Usually the only way of sorting it is through Judicial Review which will find in your favour but the LA will have saved money for another year. It’s also worth consulting a solicitor who specialises in SEN casework. Sometimes a letter from them can work wonders.

Could you ask for a medication review?

Do you know how to ask for a medication review? We went private for diagnosis but now are completely skint, because it's all so expensive, and some of these clinics charge hundreds just for appointments. Can our GP review meds?

They absolutely don’t but they will definitely put this hurdle up.

I help lots of people with EOTAS and actually many don’t have every MS consulted. For some, like my DS1, it is quite clear even to the LA mainstream is inappropriate without consulting all MS.

I am utterly amazed SOSSEN said an unfit for school letter from CAMHS/psychiatrist is required as that is not legal threshold for EOTAS via EHCPs or s.19 provision. Parents may have to enforce their DC’s right via JR for s.19 provision or appeal the EHCP to SENDIST, but that isn’t the same thing as requiring a letter stating unfit for school from CAMHS/psychiatrist in order to meet the legal threshold. For EHCPs, the threshold is set out in s.61 of the CAFA 2014 - it is inappropriate for the provision to be delivered in a school. And, the LGO is quite clear medical evidence is not required for s.19 provision - there are multiple reports and decisions stating so e.g. this report stating:

“The Council’s understanding of section 19
57. The Council said it did not provide education because:
-it did not have medical evidence to say Y was unfit to attend school;
therefore, it did not have a responsibility to educate her; and
-it did not have any reason to believe Y was not receiving a suitable education whilst she was not at school because the School kept in touch with Y and sent work home.
58. Both these reasons indicate a lack of understanding of the relevant legislation.
59.Firstly, a lack of medical evidence should not stop a child from accessing education; nor does it negate the Council’s duty to provide the child with a suitable education. The Council is entitled to ask for medical evidence to be provided, however, the statutory guidance states Council’s should also consider “other evidence” to prevent a delay in arranging educational provision. The Council should have considered information from the School, Y’s doctor, Mrs X and the early help plan - all were aware of Y’s difficulties with anxiety. The Council did not consider Y’s individual circumstances.
60. In any case, section 19 also requires councils to make suitable educational arrangements for children of compulsory school age who, because of exclusion, illness or otherwise, may not receive a suitable education unless the Council arranges it for them. Even without medical evidence, the Council had a duty to arrange suitable alternative education provision for Y under the category of ‘otherwise’.”

‘Small group’ is too vague. It needs to more specific and quantified that that. Your definition will not be the same as the LAs.

GPs are very very unlikely to review medication. If you are lucky you might get a GP to do a shared care arrangement to prescribe meds once you have worked out what works for him (our GP is now not doing any shared care arrangements for anything at all, which is a nightmare). Waiting lists for a reassessment on the NHS are absolutely horrific - minimum 18 months to 2 years, possibly slightly less if you can find somewhere on right to choose.
We found a fantastic psychiatrist who is working hard on finding the right meds for our DS, but it doesn't come cheap. I think about £800 for the assessment and diagnosis, plus £50 - £100 a month on meds, plus a review appointment every 4-6 weeks whilst we work out the right meds and dosage (and it's been an easy journey so far - lucked out on the right meds initially, and just now adjusting dosage).
I would think that the ADHD meds are unlikely to reduce the anxiety and inability to participate though - it sounds like he is overwhelmed.
Your EHCP will be key, but the LA will be doing all sorts of sneaky things to make sure that they don't have to pay for anything expensive. Have they provided you with a draft? There are lots of FB groups where people will help you to work out what needs to be changed.
Sorry to be so doom and gloom - it's a truly awful system and process. It's very difficult for people to understand how awful until they've been through it.
Also, echo what @stayathomer said. If you get chance to access one of Naomi Fisher's webinars on anxiety and school struggles, then it will be money well spent.

If you do want to look at a special school you could look at Holmewood.

Hannahhomeeducates on tik tok has v helpful videos

Well they SOSSEN did advise that @ThomasWasTortured
You really can’t comment on individual cases as all LAs are different. I’m posting on my experience which is currently going on. Your post reads like I’m making this all up! I’m really pleased that you didn’t have the same fight as I’m having but circumstances seem to be different at the moment. It’s a steep learning curve and it’s great that you’re here to help people. But be mindful that not everyone will have the same experiences as it completely depends on so many factors.
We could spend all day not agreeing, but I’m too stressed and busy for it. So well done for you being so helpful to so many people, I know that you really do try. Just sometimes, try not to minimise others whilst you do so.