ASD Nest in the greater London area?

[west39th]

Hi everybody,

Our daughter was recently diagnosed with ASD (high-functioning, speech/language issues, emotional/anxiety issues). She has an EHCP.

We think the "ASD Nest" program would be perfect for her because of the class size (max 16), the ASD-specific teaching approach and the mix with neurotypical children.

However, we are surprised that nothing like ASD Nest seems to exist in the UK - does anybody have any suggestions?

Here is what we found so far...

• Mainstream school with 1-1 support (current setup) works really poorly. We're seeing 2-3 meltdowns/episodes per day. We think it is key to get the class size down to get to a low-arousal environment.

• Private schools likely won't take her because of the EHCP (this is what a consultant from the Good Schools Guide told us).

• ASD Units seem like a good idea on paper, but if the children spend most of the time embedded in a mainstream class then there is still the main problem with class size. And if they spend most of the time outside the mainstream class, then those ASD Units tend to cater to the more severe cases. Did I miss something here?

• Finally, special schools like Holmewood, Egerton Rothesay, Gretton or Trinity School have a good class size (perhaps a bit too small even), but the gender ratio is often not good, and there will not be any neurotypical children to learn from.

Many thanks for any thoughts or ideas here.

Christian

The Good School Guide consultant is incorrect. It is possible to get an independent mainstream named in the EHCP. Not all indie MS are accommodating of SEN, but some are.

ASD Nests would be most similar to ASD ARPs. Some do cater for higher functioning ASD, although in the vast majority of ASD ARPs pupils are expected to spend some time in mainstream as that is the whole point of having the units. They attend mainstream when able to, but remain within the ARP when unable to. Have a look at Surrey’s Callum centres and Kingston’s Tolworth girls’.


Special schools generally have a greater proportion of boys, but that does vary school to school and between year groups within schools. There is also Limpsfield Grange, a specialist girls’ ASD school in Surrey.





The NEST program is the specific program for high functioning autistic children with minimal emotional disregulation in NYC district 75 and Aarhus Kommune, Denmark. It’s a program attached to researchers at NYU and Aarhus university.

There are a lot of programs in the UK which provide the same approach of small class sizes with selected above average intelligence children. I’m looking at options in the NW and it’s better to describe what those classes offer rather than just naming another program and hoping they know about it. They might have heard about it but you run the risk of your child missing out on a best placement for their needs if you skip the first steps of identifying the needs first.

2-3 meltdowns a day sounds familiar. I’m so sorry she is going through that.

You are right to look at other placements but mainstream isn’t the right place. Low arousal has worked really well for our daughter. It’s shocking how great it’s been but it’s not been through the NESt program. We are in Aarhus and they have it as an option. They put both children in the special needs school. For our daughter she hasn’t had a meltdown in months.

For our son we want to pull him out because he isnt thriving and instead asked about sending him to the local Christian school which is very calm, structured and has been working extensively with the special needs team to make sure their student have enough support.

Correction to my pp, cullum centres, not Callum as it autocorrected to.

Thank you @Aintnosupermum!

Could you point me to some of the offerings you have in mind in the UK?

My problems is that I can find programs with small class sizes, and I can find programs with a mix of ASD and neurotypicals - but I haven’t been able to find anything that combines both of those.

Of course, we don’t know for sure what is right for our daughter. But 12-16 class size with mixed children and ASD teaching methods is definitely where we would like to start. Just need to find something that comes close to that…

but I haven’t been able to find anything that combines both of those.

12-16 class size with mixed children and ASD teaching methods

These sound like you want a mainstream school with specialist teaching which isn’t likely to happen in England. The nearest will be an ASD ARP or an independent mainstream that is accommodating of SEN which potentially has a few teachers with greater knowledge of ASD along with some additional SEN Support.

Mixed children isn’t a good idea. The NeST program works because the ASD kids selected for it are all very emotionally stable and the neurotypical kids are all with an IQ of 120+. Technically speaking it’s not a mixed class IQ wise.

I have set up a meeting with a representative from the LEA who will take me through the options they have. I spoke to the team this morning (thank you to imitatingdory!) and they are looking at providing at home schooling for our eldest until assessments and school visits are completed. They immediately pointed me yo a school in Chester called maple grove. No idea how good or bad it is, but it’s a school to add to the list.

I’ve been in this game for 7 years now and my only advice to you is that no placement will be perfect. The staff want to do the right thing but they have a budget they have to work to. To find the best possible placement, spend extra on the assessments, ask the professionals which schools should be on your list, consider moving and don’t expect you can ever stop working because this stuff is expensive.

Aintnosupermum if DD is highly academically able Maple Grove won’t be able to meet DD’s academic needs. Although as you say, no placement is perfect and if a school meets other needs it is sometimes worth compromising on certain aspects.

@Aintnosupermum, thanks again.

You suggest we ask the professionals for a list of schools to consider. Beginner’s question: who can we go to?

We thought a SEN specialist at the Good Schools Guide would help, but it just felt like a waste of money. The people involved via the local council seem to think the everything is going swimmingly as it is. The experts involved in her evaluation and EHCP are sometimes helpful, but they always stop one step short of actually suggesting schools to look at.

@Aintnosupermum

We are absolutely willing to move, but isn’t there a bit of a catch-22? As in, we wouldn’t move to, say, Rochester before we’re sure DD got into the special school there, but are not going to get that school named in the EHCP until we live in commutable distance of it.

Be aware if you move LA with an EHCP the new LA will review the EHCP and potentially amend, reassess or even cease to maintain.

Even if anyone connected to the LA did give you a list of schools to look at, which is unlikely LA EPs etc. aren’t going to do this, don’t rely on it. The LA are likely to try to push you towards the cheaper options.

The problem with education consultants is many don’t understand SEN provision and EHCPs.

You can search for schools here. It doesn’t work brilliantly for ARPs because of gaps in the data the schools submit, but each LA will have a list of ARPs on their website.

You start with going to the educational psychologist for a private evaluation.

I’m looking at moving to cheshire. I’ve looked at Axia and there is a local charity I’ve reached out to called CHAPS that support the autistic community in the local area.

In the US I went down the legal route, won but overall it achieved nothing. I’d start with school and ask for a copy of their record of her meltdowns. That is evidence. You then go to the LEA and just be very calm asking them what to do because this isn’t ok. If they don’t address it, you go to private experts to get evaluations completed. For us, in the US a classroom observation by the pediatric neuropsychologist was powerful. She observed the staff restrain a child without applying any calming approach first. What shocked her was the reaction of the children. She said they were not phased by it so it was clear, in her professional opinion, this was normal to them. She also saw them use a seclusion room, something the school denied having or using with our child. Only issue was our child told the psychiatrist all about it.

So all of this cost $120k in legal fees, assessments and treatment. I’m expecting to drop £10k per child in evaluations for our move to cheshire. We also will be willing to spend £25k a year on therapy per child. It’s not a boast. Get your war chest ready.

Aintnosupermum the UK SEN System is very different to the US system.

You don’t need to seek an independent EP assessment in England as the LA do one as part of the EHCNA process. Although if you need to appeal then is the time to do one, but you don’t want it too early otherwise SENDIST will consider it too old to be relevant.

In England going to the LA informally won’t achieve anything, you need to formally ask for an early review and then proceed to appeal if the amendments you want/need aren’t made or the placement isn’t your preferred one. Mediation rarely works here, LAs use it as a time wasting exercise, if they are going to concede they will do so regardless of whether you actively partake in mediation or just get the certificate and submit to SENDIST.

In England even independent EPs are often reluctant outside of the Tribunal process to name schools. They are more focused on what provision DC need rather than the school itself.

Sorry, should have been clearer, I’m getting appointments should evaluations be needed. Better to have the appointment and cancel then call when you need it and have a massive wait. I’m also putting the money aside as I might need it for both.

Thank you so much for your advice @Imitatingdory and @Aintnosupermum. We are facing some big decisions, and it is frustratingly hard to navigate the options.

We will definitely take the advice and get a private educational psychologist to evaluate DD. (The EHCP sets out some provisions, but they are clearly inadequate.)

I am still not clear on what we would do if the most suitable schools turn out to be two hours away? Seems risky to just move and hope that the LA in that area will play ball. We're currently in Haringey, if it matters.

@Aintnosupermum, I am especially interested in your experiences in the US. The New York area, e.g. Westchester County, is an option for us. I am attracted to something like the Scarsdale School District where it looks like within the same district they have a wide range of options, including Integrated Co-Teaching (ICT), an ASD Nest-like provision which we can't get in the UK.

We are very willing to move - to the US even - if it means that we likely won't have to move again. In Westchester, NY it seems like we can get a broad selection of provisions in one district, which minimizes the risk of having to move again if/when DD's needs change.

In the UK I am still not clear on how to achieve that. Hope somebody can enlighten me.

Many thanks again, everybody!

--

P. S. Thanks also for the list of ASD ARPs. As long as the MS class size is 30, I guess I don't really get the idea. If the child is mostly in the unit (like Netley Primary in Camden), then it seems like they might as well have been in a special school. And if the child is somewhat or mostly in the MS class (like Kentish Town CE Primary), then that's precisely the noisy, high-arousal environment that should be avoided in the first place. Happy if somebody could correct any misunderstandings here. If the ASD ARP children embedded with a class of 12-18 as they do in the ICT programs in the US, then I think it would make sense to me.

Scarsdale is not part of NYC schools. It’s not a great district for high functioning special needs. It does well on paper because it’s a high income area and parents push for SEN to help bump up their kids grades. If you can be in NYC take a look at Staten Island but it’s not a great spot in terms of services because of the commute being over an hour each way in very stressful traffic. Parts of NYC will work but you need a multimillionaire budget (housing is $500k or so a year alone) Montgomery county in Maryland is talked about a lot as being excellent for 2e. I’m not sold. Newmark school in Scotch Plains is amazing but you need a district referral. Good luck with that. It’s the placement our daughter needed, the judge agreed she needed but gave the district another chance to meet her needs. They had 5 years to provide and hadn’t. The judge said they need another chance therefore another year of hell for our child. Each year we would be in court to keep her there so in effect school fees of $30-40k a year.

After our experience in the US, you need to be making more than $500k a year to even consider moving there as a family with one child with SEN. You pay for everything. For us, two children with SEN, we spent $50k on suitable aftercare for 3 children so the children could be with peers with enough structure. Each child had an hour of speech and OT a week, $150/ session so $600/week. Our eldest was the psychiatrist once a week which was $400. The developmental pediatrician was $8k a year per child and the nutritionist for our sons feeding issues was $1500/month. We did equine therapy with our daughter. That was $600/ session. Yes you can find slightly cheaper but you compromise on quality.

Unless you have this sort of budget don’t even think about it. Personally I found this wasn’t enough because what our children need is a calm and structured environment. British society is extremely tolerant of being different. American society isn’t. That’s why they have so many laws.

OP have you looked at IPSEA and SOSSEN’s websites to understand the EHCP process better? A vague, woolly EHCP without the necessary provision isn’t worth the paper it is written on. And you are unlikely to get specialist school or independent mainstream if the EHCP doesn’t reflect DC’s needs adequately.

If you commission an independent EP assessment at this stage you may well find you need another one to secure adequate provision. Getting one now before you have even asked for an early review, which the LA may not even agree to and doesn’t have the right of appeal, means SENDIST may think it is out of date if/when you get to Tribunal. Also, SALT, OT and psychiatrist &/or clinical psychologist assessments are just as important, sometimes more so depending on specifics.

The aim of ARPs is that the pupil accesses mainstream when they are able to and the unit when they aren’t or when they have targeted interventions. They don’t work for everyone but they do work for some, not all DC need small class sizes full time and some do cope with the sensory environment of mainstream for at least part of the day.

For example, the most common set up in primary is a starting point of pupils accessing the unit in the morning for small group tuition for core subjects and join their mainstream class for the afternoons often with 1:1 or 1:2. Add into that accessing the unit for any therapies/other interventions and when overwhelmed, but having the experience of a mainstream school and peers.

Although there are ARPs where the children spend most of the time in the unit but still experience some aspects of mainstream life and sometimes pupils from mainstream take part in aspects of the unit life. These are often close in comparison to SS outreach units which some LAs have, where the pupil is on the roll of the special school but attends a unit at a mainstream school.

@Aintnosupermum, your experience in the US sounds horrifying. I am glad to hear things worked out better in Århus.

I have a few questions for my own understanding. How come you had to pay for OT yourself given that the judge clearly ruled in your favour and gave the district an ultimatum. I would have thought OT was clearly something they should cover to meet their obligation to serve the child’s needs?

I am sure I missed something, are you saying that in your district in NJ getting a special school was a multi-year legal battle while in Scarsdale they would have sent the child out-of-district to maintain good stats? Or are you saying that Scarsdale likely would just have let the child languish to avoid paying for a special school?

@Imitatingdory, thanks for explaining. I can see how an ASD ARP can work for children who can tolerate large class sizes for part of the day. Probably not so much for our daughter, though.

We will get a review/appeal process going, so we can hopefully get a special school placement.

OT was not given beyond one group session once a week. The Ot session failed to address her needs and there was zero documentation to show how that session linked to her IEP goals. We hired the OT to address the fine motor skills issues which prevented her writing. The OT decided teaching her cursive writing was the best way forward. The judge said cursive writing is beyond the curriculum therefore not needed. It was ridiculous. To this day she writes cursive and it got her over a block. Well worth it but the judge was an ass.

Scarsdale will let your child languish. They will never send out if district unless you have the funds to sue them. It’s a good school district for a mainstream student but forget about it for special needs. NY state has no requirement to meet the needs of gifted students. NYC are pulling back their gifted programs based on pressure from race groups who say Hispanic and African American groups are underrepresented. This affects the provision available for 2e students.

@Aintnosupermum, when you write

"It’s a good school district for a mainstream student but forget about it for special needs."

would it be fair to say that it's a good district as long as DD's needs are within their own provisions (ICT, Bridge, LRC), but one should expect a legal battle for an out-of-district placement?

Do you happen do know of any districts in the NY area that are better for SEN?

We think our daughter belongs in a small ICT class or in a special school. We're trying to decide whether to fight that battle in the UK or in the US. We are happy to move to pretty much wherever if that means we likely will not have to move again.

(By the way, we seem to have a bit in common: I am Danish and lived a year in Århus long ago. Moving back to Denmark is not really on the immediate horizon. Seems like we'd just have to deal with "visitationen" to get a proper school placement, so feels very similar to the UK.)

Many thanks again. Apologies for the long thread, but this is super useful.

Actually it was pretty simple here in Denmark to get placement. We needed medication for our eldest and took her to the GP. He did an emergency referral to the hospital here in Aarhus. It was a 6 week wait. Ahead of time we had given them all reports for both children. PPR were ridiculous and bureaucratic and came back to say they must go to the local school first. We had the first appointment for our daughter at the hospital and they called in the resources for our daughter. PPR have not touched our case and refuse to help.

The kommune have a good selection of sports but they are an absolute millimeter dictatorship. As an example, for riding lessons we pay the same as a regular child would pay. However, its an hours drive each way. They will pay mileage in excess of the drive to the average distance to the riding schools in Aarhus kommune. It’s on you to calculate it. Miss one riding school from your calculations and your request is denied. They then only pay enough to cover the cost of petrol. As it’s so far out we need a 2nd car so I rent one. It should be a really easy calculation but nope, apparently daddy should leave work early, take paid time off to enable his daughter to the lesson. When you point out that paid time off is vacation they told him he should be thankful they make the program available and that we qualified so quickly. Meanwhile, the eldest doing riding means the other two siblings are landlocked on that day if we don’t have the 2nd car. We make the most of it but FFS, our son isn’t safe on a bus or tram. Our youngest should have soccer that day. We can’t do it unless we pay out of pocket for the car rental.

In NY, the best district for special needs is NYC which is the 5 boroughs. The advocacy work by parents with means has made it a lot easier. The problem is that you need a boat load of money to make it work for you. The environment isn’t good for our children with ASD. It’s too busy and it’s too loud. The schools in the US in general, IMO, are not that great thanks to Bush and the no child left behind policy resulting in standards being dumbed down by an incredible amount.

OP, do look at Limpsfield Grange for secondary. Excellent reputation.

Aintnosupermum there are similarities with SEN provision in England. Sometimes LAs force parents to appeal for OOA placements, more common in some LAs than others.

Your OT experience could well have been the same in England depending on specifics. LAs are only required to provide what is “appropriate” provision that is “reasonably required” they do not need to provide the “best possible education” or educate to the child’s “maximum potential”. There is lots of case law on this if you wish to read: R v Surrey CC ex p H (1984) 83 LGR 219. S v SEN Tribunal [1995] 1 WLR 1627. Stanley Burnton J in Hammersmith & Fulham v Pivcevic & SENDIST [2006]. Thorpe LJ in C v Buckinghamshire CC, [1999] ELR 179. NM v Lambeth [2011] UKUT 499 (AAC), [2012] ELR 224. A v Hertfordshire CC [2006] EWHC 3428; (2007) ELR 95.

It’s also similar in England that exceptional ability is not a SEN, so LAs don’t have to make the SEN provision for it - S v SENDIST [2005] EWHC 196 (Admin).