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Where do kids with moderate autism go?

27 replies

Takiwatanga · 06/05/2018 06:48

Hi everyone

I'm in a but of a pickle about what to do with my lad. He's 3 and has a diagnosis of ASD. He's very able in some respects , though delayed compared to NT peers. He is also impacted a lot by his asd - his diagnosis report reflected this.

I am totally unsure where to send him for school. He doesn't start school till 2019 , however it's something I feel I need to start planning now to prepare for the best outcome for my son.

I am SO scared to make the wrong decision . My son has sensory issues , lots of meltdowns (can be very violent ) and can talk but he is delayed. He has good understanding , I'd say his receptive skills are better than his expressive skills , hence the almighty meltdowns .

I am bit opposed to mainstream or a sen setting. I just find it hard to decide as my son is somewhere in the middle of the vast spectrum; it isn't clear whete he will thrive .

Those with kids with moderate ASD , what did you do? Did it work out?

I want to give him a chance of mainstream , but at the same time I feel in my gut he needs a sen setting at this age.

In our area sen schools are reserved for more impacted kids at this age. They really push for mainstream first and then if they fail they go to a sen school. This concerns me, I don't want to set my son up for failure .

I'm sorry for a bleak post, I just don't know what to do...

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Takiwatanga · 06/05/2018 06:49
  • I am not opposed (sorry)
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Peaceandquiet21 · 06/05/2018 07:59

Hi! I am in the same position and completely understand! I have no idea what setting will be best for our son also...have been told that mainstream is best to start but I really want somewhere where he can fulfil his potential and people will 'get' him and take their time with him .... have you got an EHCP for your son? We haven't but are going to apply soon... so much to think about.

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Takiwatanga · 06/05/2018 09:32

Hi peace , so good to hear someone who gets it! We have an ehcp being assessed at the moment , so we are on the right track there at least !

What is your son like ?

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zzzzz · 06/05/2018 09:37

This reply has been deleted

Message withdrawn at poster's request.

notgivingin789 · 06/05/2018 11:52

Hi OP,

It’s good your thinking about this now. All schools are different, Mainstream and special and I’ll encourage you visit both types of this schools. You can even do a dual placements (e.g. 3 days a week at a mainstream nursery and twice a week at a special nursery) at that age.

Whilst it is the “norm” for a child to attend a mainstream school. You must remember, that our lives, including children, take a different path... some children go to mainstream, private, special, grammar, Montessori, out of county, all boys, all girls schools etc. I wouldn’t let this fear stop you from looking at special schools.

MY DS was at mainstream nursery and reception and whilst he was liked amongst his peers, teachers were really nice to him. He wasn’t learning much, he was also non verbal at the time (so I was very worried about speech). But I honestly feel, his early years at his mainstream nursery and school were a waste of time. If I had known there was such things as specialist nurseries, I would be jumping up and down to get my DS in there.

However, I have seen some special schools which are not good. Also, the mainstream school, which I used to work at, was very SEN friendly, mainly due to the Headteachers interest in supporting children with additional needs. For example, parents from the school, with the Heads permission, physically built a sensory room... different types of classes were constructed e.g. Social skills class, additional reading/ phonics class (for pupils of all ages who still struggle to read) and he Head made sure that once termly, staff get SEN training. There are mainstream schools like this. However, looking back now, I think it wasn’t enough for the pupil I was supporting and I’m hindsight, not enough for DS.

My DS currently attends a specialist school, from being there, his receptive and expressive language skills have vastly improved, he has access to Occupational/speech/drama/ music therapies. However, the biggest challenge for us, is, one; due to DS school being out of borough, we don’t feel apart of our local community and have to make extra steps to be in the community (This is what I was thinking once I chose specialist but it was... DS getting further and further behind his peers, not reaching his full potiential, not learning how to speak, become very frustrated with his needs not being met VS Let him stay in his mainstream school, where the kids will like and care for him, be inclusive and be apart of the community but risk DS not reaching his full potiental, speech not developing and may possibly be aggressive to the frustration).

Also, I am having to supplement extra academic support.. e.g. DS has a tutor who he sees once a week as I don’t feel his school push that much academically. But I knew this regardless.

I feel for children who are in the middle, e.g. they don’t fit in a mainstream school but all don’t fit in special schools. It may be worth looking into Independent specialist schools as they have quite strict assessments and have a specific area of specialism they have to support children (e.g. speech and language schools, Autism schools, Dyslexia schools, Dyspraxia etc).

FYI. Smile When looking at mainstream, especially special schools, don’t be won over by their facilities. I’ve seen some schools who have amazing facilities, high tec sensory rooms, a lovely playground with loads of equipment etc. Which is important but it does pull you away from seeing the school in a bigger picture. When I first looked at DS specialist school, which he attends now, it was in a very small building, it didn’t have amazing facilities, they did have a big-ish play area but it didn’t live up to my expectations from what I’ve seen with the schools I’ve looked at. However, I just knew that this school was the one, it was the learning culture, the access to many therapists, open communication with staff and teachers, the school seemed very supportive, that above the facilities won me over.

Sorry, this is such a long post ! But I can understand your anxieties and honestly if I knew they were specialist nurseries, I would of be banging my door to get DS in as his needs would of been addressed much earlier. But it’s up to you and good luck !

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Takiwatanga · 06/05/2018 14:25

Thank you zzz and notgivingin for your responses. They were really helpful , and very insightful. It's especially interesting to hear how both your DC's have been to both mainstream and sen schools ...

I will look into my son getting some hours at a sen nursery but where we are there are limited spaces and it tends to be for profound disabilities . We have some out of county nurseries I could view. Hwoever we are starting him at a nursery attached to my daughter's school soon, which is change for him. I don't want to add more change just yet .

I'm of the mind that if this nuterry doesn't work out , we will have to try the sen route anyway. As that will be 2 mainstream nurseries that haven't worked for him... His current one can't really handle him , but pretend they can to a large extent due to pressure from the LA . They were constantly contradicting themselves and in the end I decided I'd apply for his ehcp myself and get him in a new nursery .

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birdonawire1 · 06/05/2018 20:09

Have you looked out of area for a MS school with an SEN unit attached. This can be a good compromise for children with autism.

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Takiwatanga · 06/05/2018 20:45

Birdon - yes , we are considering one like that, we would probably have to relocate but happy to do so if he gets a space. It's a massively over - subsrcibed school

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Lowdoorinthewal1 · 07/05/2018 16:54

You would not access a base via the normal application route. You would need an EHCP naming the base as his educational placement so you don't need to move into catchement. Although if it is too far to travel that is obviously an issue.

In my LA (lots of it is rural) pupils travel up to an hour to get to specialist settings such as bases.

If you are going for a base make absolutely sure it is appropriately staffed with specialist teachers. Increasingly they are run by TAs which is not OK for kids who spend the majority of their time in the base.

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Takiwatanga · 07/05/2018 18:12

Low - thank you. We are in the process of being assessed for an ehcp.

That's worrying to here bases are increasingly run by TAs. Do you mean bases attached to mainstream schools specifically ? Or all sen settings ?

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Lowdoorinthewal1 · 07/05/2018 18:39

Just bases attached to mainstream.

The idea is that the children in the base all access mainstream most of the time, so the bases only need to be staffed by TAs to support the children when they need down time etc.

Reality is that there are lots of children in bases who are too anxious to access mainstream much at all. This is because of the severity of need they have to have been displaying in the first place to get an EHCP and specialist provision. Realistically a child who can access MS most of the time won't be given FT specialist provision.

As a result, there are lots of children out there accessing most of their education in bases only taught by TAs.

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Takiwatanga · 07/05/2018 19:13

Low, that's extremely concerning but not surprising , sadly ...

I'll be sure to keep this in mind.

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Ellie56 · 15/05/2018 20:16

Our son went to mainstream primary, where infants was fine but juniors was not so fine. (We now realise it was because he did not have enough support) . He then went to a fantastic mainstream secondary where they gave him virtually 1:1 support.

He went on to mainstream FE which was ok to start with, but then fell apart because of lack of support and understanding. When he was 21, for the first time in his life, and after a year out of education, DS went to a specialist educational setting, specifically for students on the autistic spectrum. He's been there nearly two years now and is doing fabulously well.

It really is all about getting the right support at the right time.

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Lovemusic33 · 16/05/2018 17:16

My dd started in MS, I spent the whole 7 years trying to get her out, being refused each time. She’s now at a ASD specialist school out of county for high school, I had to fight hard to get it but was worth it, I just wished she had got a place much earlier as MS didn’t really beniffit her and just caused a lot of stress.

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StillMedusa · 17/05/2018 23:31

My DS did his whole school career at special school, following a mainstream nursery with a 1:1
He was a relatively able pupil in special school (he had very limited speech til he was 5 and mild physical disability ) but the school was amazing. As he made progress he did some integration with mainstream (joint site..pretty rare I suspect) but 90% of his curriculum was in special school.
He reads well, (writing poor due to hypotonia but his spelling is excellent) and thanks to his special school, he is as capable as he CAN be. He is semi independent.. can take one bus by himself and now has a part time job in the local ASDA where they adore him because he always turns up on time, does exactly what he is told etc etc. He is very much 'Rainman' (stereotype but it really is him) and best of all he is happy and confident, mostly I think due to the skills he gained at special school.

I absolutely believe it was the right environment for him, where he felt an 'able' pupil.

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Stradbroke · 18/05/2018 10:21

Hi - my daughter is in the middle and it was hard to find a school that seemed a fit for her.

She is verbal and socially fairly able (certainly willing!) but academically she really struggles. She was in MS with 1:1 support but was spening more and more time out of the classroom.

We moved her in September to a SS after 2 years of looking.

It has advantages and disadvantages. I would love her to be in MS, but the environment is too intense and she didn't have peers.

In SS she is one of the most able, but is happier. She is in a class of peers, a small class (10) and is so much less stressed. Also there isn't a constant battle for inclusion, or lurching from crisis to crisis as there was in MS. Also in MS she was being taught by a TA whereas now she actually has a class teacher who is teaching at her level.

Disadvantages are that we are not in the community, she has to be driven to school rather than walk and academically I think she could be pushed more.

I don't regret starting in MS, but once in there is a battle to get back out again!

I would echo what others have said. Go and see the schools. I chose this one because of the genuinely happy atmosphere and the class of peers.

Good luck.

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KitKat1985 · 21/05/2018 19:25

Hi all. I hope you don't mind if I join you as I'm following with interet. Brief background (copied and pasted from another thread of mine to save my fingers!): DD1 is 3 years and 8 months. No formal diagnosis but lots of warning signs for autism (developmentally delayed in all areas, unable to independently speak sentences for example, but will 'parrot' lots of things she has head from us / TV; doesn't interact with other children, makes a 'humming' noise a lots, very distressed by changes to routine etc). She has the language skills of a 2 year old. We're awaiting a lot of appointments right now including SALT but there seem to be long waits for everything, and we have no formal support in place for her right now. Her nursery referred her to the Early Years intervention service (the local council education support service for pre-schoolers) and we had a letter through last week to say her referral had been accepted, and she would be assessed in a couple of weeks time (they are coming to see her at nursery and at home).

She's got a mid Sept birthday so thankfully doesn't start school until next year, but obviously we need to start thinking about schools. I'm not sure she's quite impaired enough for a SEN school, but I'm struggling to see how she will cope in mainstream. In particular she makes loud humming noises when she concentrates which I can see will be really difficult for a mainstream teacher to manage who is trying to get the class to concentrate quietly on work.

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Takiwatanga · 24/05/2018 19:03

Hi, sorry for the late reply all. I have really enjoyed reading the experiences of others. I am really grateful for your input.

KitKat, it is hard isn't it? I am afraid I don't have any answers as I am still so unsure myself...

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northernglam · 24/05/2018 23:21

We had an aba programme which included part time attendance at mainstream (he was supported by 1:1 external aba staff in school). He also did aba out of school. we could pick bits of mainstream that worked for him and still have specialist autism input lots 1:1 language work etc. Benefits of mainstream were academic expectations higher than if been at special schools round here. Pool of peers to practise skills on. Close to home. Very tolerant noise etc now. Downsides were the gap got wider as he got older and really he should have moved at year 5 as he needed to work in a group of similar ability peers and the last 2 years despite best efforts he has been more with his 1:1 (although the school set up some group activities with him). It worked better when he was younger as he was good at rote learning but his language difficulties mean he hasn't moved on to higher language skills like the other children. If there had been a suitable autism school I would have moved him at year 5. It's always a compromise and what works one year might not work the next so I suggest doing what feels right now and just taking it a year at a time. You can't think about 7 years. We ended up changing schools at year 2 which we hadn't expected to have to do (crap teachers). We've had the same aba consultant for 8 years though who have been fab and most of his progress has come from them. They have driven everything else - school has been an important experience but we haven't had to rely on it to take the lead. Which with some teachers was just as well!

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Takiwatanga · 25/05/2018 05:32

Thanks Northern, I have considered aba in the past, how do you go about getting an aba consultant for school times? Is it lots of money?

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northernglam · 26/05/2018 22:17

It is lots of money we had go tribunal to get it funded. The provider employs staff who then go into school - last 2 years a school ta has been trained by provider to work with him.

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typetytypetypes · 27/05/2018 10:54

Bit slow to this but we’ve been through similar thoughts and continuing. Is there a way for you to find out what local provision is really like? Eg through parents groups or local professionals you trust. We have two DCs, both autistic. When looking for nursery for DC1 we were fortunate to have home visits from a good local Portage worker (doesn’t exist in every LA) so she knew what a lot of the settings were like, but a parents/local early years or SEND professional would be a good place to start. Likewise for starting Reception onwards.

DC1 is mainstream with 1:1 support funded by EHCP. The nursery he went to is not specialist but takes a special interest in supporting SEND children, especially autistic children, about 25% of children in the nursery are autistic. This is what DC1 needed, their understanding and capability is brilliant and really helped him to develop. His school is similar (in Reception now) - mainstream but long history of supporting autistic children, it has an autistic provision (ie a base) which we didn’t apply for but DC1 can access some of its resources like sensory room. The provision is properly managed, has a specialist teacher, SALT etc so seems to work well for the children there.

DC1 struggles most with focusing, which in turn impacts his understanding, communication etc, but once focused can pick things up quickly. He is very sociable and loves being with other children, just doesn’t always know how to join in. He is fine with change, and noise, other things overwhelm him (he has strong emotions, really struggles with the concept of ‘losing’, specific sounds bother him rather than noise generally, he is drawn to bright colours so fine with busy classrooms etc). With all of this, we felt mainstream was right with the right support and understanding.

For DC2, he is in the same nursery DC1 attended and doing brilliantly, but very different personality. Dislikes noise (makes plenty himself!), dislikes crowd, struggles with change and transitions, gets incredibly frustrated. However finds it much easier to focus on tasks and picking up words quicker than DC1 did (both speech delayed). Reception isn’t until 2019 but if he continues this way, we think we may apply for a provision place in DC1’s school, as it’s a much smaller classroom so quieter and more support. Not sure specialist would suit him as he is doing brilliantly in nursery which is mainstream, but nursery has more adult support than Reception even with 1:1 support (he also has EHCP with this funded).

Having said all of that, there is a very good specialist school in the area, I just don’t think it is the right place for the DC. However we’ll see how things go as they get older, I’m not sure about secondary for instance (but that is a couple of years off Grin).

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Takiwatanga · 27/05/2018 11:16

Thank you type, that's really helpful. Lots to Consider!

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magicroundabouts · 27/05/2018 18:14

Hi OP, I don't have any advice as such, as I am in the exact same position! My DS is due to start school Sept 2019. We recently received his ASD diagnosis and now are in the middle of getting an EHCP in place.

Our local mainstream school is lovely and has a good reputation for SEN, but DS has quite significant sensory needs and I am worried he just won't cope. He struggles with loud noises and busy environments and can become overloaded very quickly. He has 1:1 at preschool, but they don't have the expertise that he needs and it has meant he can spend more time there but he is not learning anything particularly.

There seems to be this assumption that all children will start in mainstream and then if it doesn't work you can move to more specialist provision. I have been told though that in our area that if you need to move your child later on you can find that you have a wait of 2+ years for a specialist place to become available Shock.

It is so hard to know what to do. There aren't any specific ASD schools in our area either. We are going to look round the special schools and hopefully get a better idea if one would be a good fit. It feels like such a lottery Sad.

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Takiwatanga · 27/05/2018 18:57

Thank you, magic. It's the exact same here. They push mainstream as a first option. My fear is also having to wait years if mainstream didn't work... It's all so worrying

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