To want to hear some success stories of DC with ASD/C in mainstream school please

[Knoxinbox]

My DD has recently started reception in local mainstream school. No formal diagnoses but HV agrees with me there are enough concerns re: high functioning ASD that she has referred DD for assessment, currently awaiting initial appointment (and waiting and waiting and waiting....!)

Anyway, negotiated gradual start of 3 mornings a week and start building up from there... DD is struggling even with this. Having almost daily meltdowns at home now, not sleeping well, says she’s worried about school, refuses to eat or drink there (one reason she doesn’t stay for lunch)

I joined the Facebook group Not fine in school and now I feel utterly horrified and down about all the awful stories on there about how schools have failed to support their children with SEN

Anyone out there with a success story of a child with ASD attending mainstream school? What do you think has helped? Any advice to give a newbie just starting down this journey?

Should I push for an EHCP before diagnosis for example? Try and involve Senco from the beginning? Try and negotiate a continuation of the flexischooling arrangement we have pre-CSA?

Thanks in advance

Someone else mentioned the SN boards on here as a great help. There is always always a chat thread (goose and carrot) which you can hop into and out of as needed for a rant, celebration or advice!

www.mumsnet.com/Talk/special_needs_chat/3685385-Goose-and-Carrot-Reunion-The-one-where-PolterGoose-takes-back-the-keys-and-props-up-the-bar-for-MNSNers-old-and-new

I have a son with ASD and ADHD who has been in mainstream state education throughout (now in Y13). Things were very challenging to start with, but it has been a steady upward trajectory.

Nursery, reception, Y1 and Y2 were frankly awful. He couldn't do any of the things that were expected of him, his behaviour was unusual and sometimes inappropriate. We were hoping he would model his behaviour on the neurotypical children around him, but progress was slow.

New school, Y3 to Y6 was better but he was still needing support. The school identified that he is also highly able and started differentiating his lessons, which helped to keep him engaged.

Secondary school, Y7 and Y8 were much better. Minimal intervention needed. The work was more appropriate for his level and he was happier.

From Y9 onwards he has gone from strength to strength. No additional support needed. Has made friends. Excelled in his GCSEs. In Y12 he was awarded a prize given to the top student in the year (both academically and in terms of contribution to the school).

In the end, mainstream school was the right choice, but it didn't feel that way at first.

I would agree with DaisyChains that adjustments at playtime helped. Once DS was allowed to sit in the library (rather than having to navigate the unstructured social chaos of the playground) he was much less stressed.

The school had some outdoor lessons and he was walking to and from school, so I wasn't worried about lack of fresh air or exercise.

Unless your child is the type who is the typical high flying maths and science type who doesn't display worrying signs of anxiety or depression, it is unlikely that a mainstream secondary school will meet their needs effectively. What with changing attitudes, zero tolerance rules and lack of funding, schools can't deliver what is on the child's EHCP

Primary schools are better at it for the most part but in secondary schools, a lot of time is spent trying to conceal that we aren't meeting the child's legally sanctioned needs. The children who do get what they are supposed to are those with parents who won't accept anything less. But to do that, we take from another child with a "less engaged" parent.

The two things that I found seem to make the difference is:

1. How disruptive the child is to the mainstream environment and not how severe they present. You can have a very bright, 'high functioning' child who is highly anxious and will lash out at any time to adults, children etc and the school will be crisis managing all the time to protect the environment and other children - the tolerance for this only seems to last so long and the behaviour sanctions can quickly get worse. You could have a more (on paper) classically autistic child with learning needs etc who is no bother to the classroom and is quiet and easy to support (doesn't mean the needs are being met) but schools are more tolerant and supportive.

1. What funding your LEA chooses to adopt. Some are more generous and will fund 1:1 support. Others (like mine) only do banding and the upper banding is nowhere near enough for 1:1 support so it becomes a battle between the school and the LEA to argue what money is needed to fund the EHCP (because professionals rarely write - needs 1:1 all the time!) and the child becomes stuck in the middle with everyone getting more and more irritated at their presence.

I won’t go into all the ins and outs but my DD presented as more ADHD at school but was diagnosed with ASD and SPD at 8. Ended up excluded in year 5 and spent a year in special school (behavioural school as no ASD school here unless other learning disabilities).

We fought to get her into mainstream secondary as that is what she desperately wanted. It’s early days but year 7 going well so far (with A LOT of support) but she has made friends and is extremely happy.

Our daughter masks socially and has a demand avoidant profile. She is explosive in school. We found primary schools couldn’t manage her as they did didn’t understand her. Some ASD kids manage in primary due to how their ASD presents and how good the staff are.

Please do speak to your school SENCO and discuss what support they can put in place for you. To get the EHCP school needs a lot of evidence of support they have tried etc before applying. We have many children with ASD in our primary school. Reception and Y1 can be very challenging as so new and tiring, however there are many success stories. Keel an open mind to special provision too, if it turns out this may suit your DD. Our autism support offficer tells parents to look at all the school options as sometimes they have been put off by 'severe' needs lookjng special schools when there are a range of options (depending on where you live and space...)
Good luck. X

@DerbyRacer my DS absolutely thrived when moving up to secondary school, it made so much more sense to him- maths in a maths classroom with a maths teacher; french in a french room with a french teacher etc rather than one room, one teacher lots of different lessons! I was really worried about him going up too, but it was really the start of him making more sense of school, finding friends and enjoying and achieving, and as I said he’s now at Uni, living independently

@yellowellies, thank you it is great to hear that your son got on so well. It is a huge worry for me. I hope my son does as well you yours :)

Thank you so much for the replies, really helpful

Bumping

I think a lot of children in NFIS have a letter diagnosis or are in the pathway. And schools tend not to ‘see’ the autism. Dd2 11 has an EHCP and has just started secondary. She has a mentor, which would be very helpful, but doesn’t see her consistently, which means I am always having to contact. Again she appears ‘fine’ but she is spiking in her OCD tendencies (she won’t go to cahms so they’ve signed her off) and self harm. I have to keep ahead of the game, my knowledge has to be better than school, I join as a parental rep on LA boards and I really know the law. I do hope dd will manage through to university, we really have to scaffold her at home, but we e gone through lots of periods of school refusal, and we’ve emerged the other end.

Dd7 also has ASD. Different from dd2. School are about to apply for an EHCP, and the primary school are now very supportive and proactive.

The number of adults with ASD in employment is really low. I have a couple of HFA relatives (undiagnosed) who do not work as adults. I urge you to always be involved with school and look ahead at the next transition (eg ks1, 2 etc). Ultimately it all depends on the profile of your dc ASD and in turn the support they get - it will be a different outcome for everyone.

imip where do you go to find out “the next step” and the law etc?
I always find people seem to just “know” these things....I really dont and am finding it all quite a mind field tbh. Especially what I can expect from her school re: support whilst going through the assessment process

What do senco actually do? Thanks

Well, basically stated about 6 years ago on MN, who lead me to special needs jungle, then ipsea and SosSEN. I made friends at support groups and the local parent carer forum (every LA should have one). You could contact SENDIAg, look on your local offer (again it’s the law every borough will have one). Google your LA and local offer. Join FB groups that are relevant. Make contacts, speak to people with older children. You can do it!

That’s really helpful and terrifying in equal measure 😬

I must admit I feel so overwhelmed right now just trying to get her to school 3 mornings a week and see it as a positive thing, and juggle baby DS and keep the house ticking over that I just don’t know where to start...
The biggest 2 things right now are that she refuses to eat or drink at school right now and is still not potty trained. She’s in pull ups and simply refuses to engage in the process at all, she just gets hysterical

I wish I had some positive stories. I’m getting sick of my dds school. I’m constantly having to pick her up at the drop of a hat and they are now making me pick her up at lunch time. I have 2 others at the school so that means dropping them to school picking dd up at 12.30 and back for my other 2 at 3.20. All with a toddler in tow and I’m a lone parent so no help.

Really sorry pumpkin that sounds really tough, I can relate somewhat

My son has mild ASD. We live in France. After a rocky start in nursery I sent him to reception at a private school that boasted of its SEN support (and charged double fees for it) but expelled him fairly quickly for a series of minor misdemeanours. I put him back in state primary without mentioning diagnosis. (At the time, France was often refusing to let ASD children attend mainstream.) It was not easy but he got through primary.

Secondary was much more difficult at the start, but the law had evolved in his favour by then. After some incidents the school tried to pressure me to remove him. While explaining to the school that I’d see them in court if they kept that up. I also explained to DS that he was within a whisker of wrecking his future. He was mature enough to improve his behaviour, with some help from a psychologist. Now he is 15 and doing fine in mainstream. If you didn’t know his history, you’d never guess the diagnosis.

Hang in there, OP.

I agree with @teatimedreamer. My ds and dss both have autism, in different boroughs. The one who is cute and smiley when not upset and crying gets lots of support willingly. The one who blanks everyone, lashes out or runs when upset, and has some antisocial habits, got way less support (until tribunal...)

So far secondary is better as the classes are more structured and kids can go to an inclusion room or the library during breaks. Will have to see how child 2 copes but at least he now actually wants to go to a secondary school (6 months ago you couldn't even mention the idea).

Half the local schools seemed to have staff who grasped the idea immediately and said how they have adapted classes for various kids. The other half... let's just say I'm very glad their EHCPs mean my boys won't have to go to one of them.

@PumpkinP that sounds very much like illegal exclusion... If school don't follow a formal exclusion procedure, they are not allowed to ask you to pick up early...

Yes pumpkin, I agree that is ifffolling and you need to bring it to someone’s attention. Your child is being sent home because it is in the best interest of the school, not the best interest of the child. Do you have an EHCP? If not, do a parental request. If so, we’ll something is going majorly wrong and you need an emergency review. educationinspection.blog.gov.uk/2019/05/10/what-is-off-rolling-and-how-does-ofsted-look-at-it-on-inspection/

Part time tabling is included here, but not defined separately. Your LA is responsible for the full-time education of your child. They are failing in this statutory duty. You can bring it to their attention, go to IPSEA or SOSSEN for advice. If LA doesn’t move, SOSSEN would probably draw up a pre-Action letter to warn of JR for failure to comply with their statutory duty. I think pre-Action letters are usually covered by legal aid. I only had to threaten one to get the LA to comply.

Bumping for the weekend crowd

And also to ask a few questions about a My Support plan.... it’s the first line in the process towards an EHCP isn’t it?

Who starts it at the school? Class teacher? SENCO?
Anyone’s DC find that it was enough and you didn’t need to progress to an EHCP?

Thanks

No, I suspect a my support plan is a non-statutory support plan designed to save money. In law, there is only SEN support or and EHCP, but LAs have have developed a middle tier, my LA tried to do it but we successfully fought the plans.

I doubt my support is another word for SEN support, but it varies borough by borough.

So my support is not a national thing like an EHCP then? Just a local authority initiative?

Argh it’s all so confusing! Is there a good website to explain all of this? Thanks