Published on 12, July, 2020
Hi there! I really need your help to gather as much information as possible.
Here is my case
I have an autistic son (7yo), a really heavy ASD case. Almost non-verbal (tens of words, couple of phrases). Can't serve himself. We live in eastern Europe.
We are attending ~15-20hrs of ABA therapy from the age of one and a half. This autumn we planned to try to put our son in a special school near our home, at least for a couple hours per day.
Now I have an offer to London. Really good one. And I have no idea about what I'll be able to provide for my son in the UK.
I've found some information from Google, but it's very fragmented and I can't build the whole picture.
1) As I understood, first of all, we'll need to have a local autism assessment in the UK. And government-based autism assessment could take up to several years.
Is this correct? Is it possible to pay for a private, paid, but fast autism assessment? Will it be equal to the government-based one?
2) After #1, we'll have to get an ECH plan somewhere. At local authority? Does this mean that different London districts or different cities could give very different ECH plans? How long could it take and how difficult is this process?
3) After getting an ECH plan, we can apply to some school or special school. Here is kind of some impenetrable fog for me :) I don't know anything about UK schooling.
- can we apply to any school? Or probably only to the nearest schools in a place where we will rent something?
- are any of the nearest schools obligated to accept our application?
- basically I even don't know what should we look for: special schools, schools with inclusive classes, or anything else
- I've found several really great-looking special schools for autistic children. How can I understand will I be able to put my kid in some of these schools, will they have classes, are they free or paid, etc, etc. No information about such kind of things on any school site :(
- where the situation with such special schools is better: in London itself, or maybe in small cities around London?
Basically, if I understand correctly, I should aim on some school first, and only then select a place to rent something near this school. But how to select something without all this information?
Any advices are very welcome! And thank you in advance :)
Another questions:
- are there enough ABA services in the UK? How much do they cost?
- how much do nanny services cost in London? Are there "special" nannies available? Like, familiar with special needs, with ABA, etc.
First of all, this company might be able to help www.autismeducationtrust.org.uk/
Most likely, your 'severe' case is being made worse by ABA. They try to "help" based on Neuro-Normative wiring and how Autistic kids grow is fundamentally different. We are wired for function not fantasy, therefore the way we 'play' is this: non-functional toys seem absurd. A wooden apple, a faucet which doesn't work, a baby which doesn't move. In a perfect situation, we are shown how to use tools with our natural attraction to functional aesthetic. We are afforded hours and hours to hyper-focus and discipline one craft. Non-verbal children can communicate and express in so many other ways. Some eventually use language. One woman I met with said her non-verbal son is building maps, structures and has incredible potential with geography/geometry. Why? Most autistics have difficulty with language - it's used incorrectly to begin, and our brains can be rich with imagery or even formulas. ABA doesn't use this knowledge to help grow the autistic but base all assumptions that our brains are 'wired' the same. They don't respect the Monotropic brain: https://monotropism.org/ So they continually interrupt a child's flow, which is the same as waterboarding. They don't respect that Autistic children are more likely to also be hyper-sensitive not just to external stimuli, like an LED without a full spectrum, which isn't natural and doesn't mimic the sun, but gut sensitivities to food sources which have been modified, sensitivities to all kinds of unnatural non human-friendly elements. We are wired to use our senses to Calculate Danger - if sheilded properly and allowed respect, space to develop and proper understanding, we can smell meat a hair off the moment it's taken from the fridge, we can sense changes in weather, the time of day with the birds, an electrical fire across the house, hazardous VOCs, how to acoustically treat an auditorium, when a foundation is improperly laid, how a bridge will stress and potentially break. We are needed in society - ABA doesn't see this. Furthermore, we don't dull these senses like NeuroTypical humans, either due to different Beta wave oscillations and/or the difficulty with language, as other neuro-connexions in our brain are much stronger. So if subjected to a desensitising 'therapy', it is torture. We can withdraw, and turn to extreme survival mode, incapable of growth. That kind of therapy is torture, it's no different from the gross misconduct the anti-psychiatry movement stood against or the kind of dehumanising torture in sanatoriums a hundred years ago. It shouldn't be happening.
Two articles I'd recommend: autisticnotweird.com/.../ And this one on schools not designed to understand autism which can be as useless as ABA www.psychologytoday.com/.../are-we-giving-autistic-children-ptsd-school
If everyone had strong connexions in the lobes responsible for linguistics and semiotics, civilisation would sink. Artists, Scientists, Philosophers can be autistic visionaries who are not easily swayed by tribal use of language which is typically far from pragmatic, nor threatened by isolation. Most non-verbal children are incredibly creative thinkers.
Some schools which might help
https://www.acorneducationandcare.co.uk/
https://www.aspriscs.co.uk
https://www.cambiangroup.com/
The UK has many forward thinking organisations for autistic children and adults. There are collectives you can tap into and find better situations which might actually be much more helpful for your kid.
https://aucademy.co.uk/
https://thepsychologist.bps.org.uk/flowunlocked-east-london