Cont (2) autism diagnosis and descriptions

[OneFrenchEgg]

Continued from previous thread

There's examples on other thread where posters were saying the severity of the behaviours is caused by LD and not Autism. Which isn't true.

@doadeer is the aac high tech? We tried a couple and then settled on an app on an ipad which ds engaged with the most. He could easily use the ipad and the app was specifically designed for children with autism rather than a generic app. You do need an speech therapist that knows what they're doing. We modeled on it do used it to support what we were saying and then modeled any communication from him, it went everywhere with him so he had it at all times, the ipad was only used for this too so it was clear that it was for communication and nothing else (the La funded it via his ehcp). As @JustKeepBuilding has said it sounds like the ehcp needs tightening up. You may have to get some private reports yourself. If you are able to get to the Midlands Libby Hill at Small talk slt is really good, quite reasonably priced and has loads of tribunal experience. We had already got the aac in place before we used her though but worth a conversation. Schools can vary too so even though the LA has agreed special you need to make sure it's the right one for him. Also if he's going to be using his aac device (if it is a device) he'll need a 1:1 to facilitate it, model etc, encourage, etc. Have a look at ipsea and sossen websites. The sossen little guide books are amazing.

Sorry just thinking about it, you need to have the ot and slt in section f. The therapists need to detail how often he needs support, what level of training they need to provide the support, thst it's on a 1:1 basis, what training the TA or teacher etc needs, what equipment inc aac and sny sensory equipment, if they need time for meetings and reports writing inc ar, who will over see any progress they put into place (them), how and when they are updated etc. Really get the derail in there. If he has sensory needs make sure the ot has sensory integration qualifications (post grad) and is able to assess this as well as daily living, hypermobility (if needed), dyspraxia (if needed) etc.

We have proloquo, he just isn't interested in it. We use it all day long. I can't find an SLT that has capacity who knows aac so we are doing ourselves.

Honestly I think we are accessing all the support we can but it's a failing Local authority and there is no more we can access. He has a great nursery school and we have managed to get him to be able to stay there a couple of hours after 6 months, initially he could only manage 30 mins. He hates the school environment, happiest in the woods where it's quiet.

We can't travel to the Midlands we live in London that would be too stressful for him.

Everything is a huge battle I'm absolutely exhausted. Going to the SLT sessions is just crap. They are really hard to get to, I get a taxi, my son hates the environment, he has zero interest in the therapist and she just tells me to keep doing what I'm going. It's the most pointless thing.

@doadeer my sister realised something was up before her child was one. It was more a physical thing then. She was diagnosed just before she was two. She has a variety of physical issues as well- a pervasive muscle weakness which affects her digestion and ability to form words. She has learning disabilities too. She does not live in this country and goes to a special school.
@OneFrenchEgg I also think behaviours that can be 'forgiven' or even considered cute at a very young age becomes increasingly unacceptable as the child ages and finally intolerable (to society as a whole) as an adult. My niece is super friendly and affectionate, but as she is now about to become a teenager even this will mark her out as different. Other parents used to cross the street where they lived even when very young, even without any display of behaviour outside the 'norm'.
My sister does use the term neurodiverse though, and says her groups prefer 'acceptance' over 'awareness', though suggests you can't have one without the other.

the key factor when young is ensuring that an ehcp is in place that is water tight and the setting is the right one.

I agree, @Sirzy. An excellent EHCP is worth the fight for it.

@doadeer you really need an early review of DS’s EHCP. Provision in EHCPs is based on needs, not what the LA has available for you to access. Failing LA or not. You might have to fight for it but with an EHCP there is more support that can be accessed.

The SALT is rubbish if that is all they are doing. DS needs ongoing direct provision from at better SALT.

If DS struggles with travelling the therapists can come to him. If DS likes the woods and is finding school difficult have you considered an AP for part of the week? Or even EOTAS if school isn’t suitable.

I need him to be in a setting a few hours a day, I am absolutely exhausted. I've had him every single day for 4 years, we have no family help and he's never stayed with anyone else. I have chronic migraines and my son attacks me a lot. I need the two hours he goes the nursery. They are great. The local authority aren't. I can't see what else can be done, he is on the highest support band there is. How can they offer more than this? The problem is the "support" itself is just so poor. The nursery are excellent I don't want to remove him from that.

I'll have a look at what you've said but I don't know a single child locally who has daily SLT AND OT at this age. When he is 6 he can attend an excellent autism school if we get a place.

He has no interest in wanting to communicate further than leading us by the hand at the moment, we will obviously persevere with AAC. He knows how to use his entertainment ipad but just isn't interested in his communication ipad. Not really sure how I can force this. He marches to his own beat.

He is also seeing the "specialist salt - they aren't going to give me anyone else

he is on the highest support band there is. How can they offer more than this? The problem is the "support" itself is just so poor.

Support bands and funding bands are irrelevant. The LA can offer more than their top band. The provision in F is what is important as it then must be provided regardless of claims of lack of funds/resources/staffing. If the support is poor that is because the EHCP is poor (or it isn’t being enforced). To give you an example, DS1 has EOTAS and his package costs in excess of £100k pa and DS3 is in MS with a huge amount of support costing more than £35k, yet our LA’s highest ‘band’ is lower than this. This is only possible because their EHCPs are excellent.

they aren't going to give me anyone else

They will have to fund someone else if the current one isn’t meeting the needs/provision in the EHCP.

What is normally done/provided locally is irrelevant. If it is detailed, specified and quantified in the EHCP it must be provided and can be enforced if it isn’t. You may have to appeal to ensure it is in the EHCP though.

AP &/or EOTAS doesn’t have to mean he doesn’t attend a setting of some sort or that you are the one providing the care.

@Itisbetter I think the key thing is to love and enjoy the person you have and REALLY question what is right/wrong for them.

I wholeheartedly agree with this

The “support bands” (which aren’t supposed to be used) are irrelevant if what is written into the plan itself isn’t precise and the right support for the child.

ds plan has a high level of funding with it - for a mainstream placement - and the plan itself is specific but at his annual review it was agreed that we needed to ask for more in terms of therapies and so me and school will be fighting for those to be added into the plan AND for them to be correctly funded beyond what he gets now because it’s what is needed for where he is now.

@JustKeepBuilding My DS has a diagnosis of ASD and ADHD, his school has categorically said he will not get an EHCP and his behaviour does not qualify for any extra support. They have given EHCP's to his classmates who need support (either they are behind academically, cannot access the curriculum or have more severe social issues), so I know that the school is willing to support EHCPs. He is very academic, ahead in maths and English as per his SATS results. Whilst he had struggles with social skills in the early years, he has settled into playing with a small group of friends or is equally happy to play/read/draw by himself (no more conflicts or upset in the playground). He doesn't get anxious at school or school refuse. He doesn't meltdown or run away from lessons - he can access everything. He doesn't have personal care issues at school. He doesn't have issues with repetitive behaviours, rigidity or transition/routine changes. He attends after school clubs without additional support. The only thing school has commented on is he struggles to sit still and can interrupt sometimes, and on school trips he needs to be watched closely (the two times a year they go on a school trip). None of this stops him from accessing the curriculum, and he is happy to attend school.

What would an EHCP state in my son's case and would he even be eligible? I'm hesitant to apply for one knowing the school won't support it.

I've also had to pay for everything privately; ASD and ADHD diagnosis's, his ADHD prescription and medication (which he hasn't taken yet and we're not sure that he will). I've had to do this privately because the waitlists were horrendous and we were also told that DS was unlikely to qualify for much.

the bar for an ehcp needs assessment is very low. It’s MAY have special educational needs and MAY need extra support in school .

schools don’t decide who gets it. Schools are often fed lies from local authorities. If you think your child needs extra help then please apply yourself. Ipsea have a very good guide

@Sirzy Thank you, I'll have a look at Ipsea. I'm not sure if I do think he needs extra help at school or not, It's difficult to ascertain as a parent when school consistently says he doesn't need an EHCP or extra support.

@Sirzy Is it worth getting an Educational Psychologist in or someone who can assess need first, before applying for the EHCP so I have evidence?

I've just read this on the Ipsea website:

“the local authority should consider whether there is evidence that despite the early years provider, school or post-16 institution having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child or young person, the child or young person has not made expected progress”.

This doesn't apply to my DS, so he's unlikely to qualify?

aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.
Well we used to have a really useful label called Asperger’s Syndrome, which specifically described people who had social and behavioural difficulties but no intellectual disability. Then they decided we weren’t allowed to use that word because it wasn’t politically correct enough, so they took it away and now we are all just “on the autism spectrum”. Which really isn’t helpful because people’s difficulties can be vastly different depending on how they’re affected.

Personally I would like a word to replace Asperger’s. Or yanno, just keep calling it Asperger’s like we did for decades before the woke came along and started whinging about it.

I agree that it doesn’t seem to serve anyone’s needs if it’s just one name covering a vast variation of needs/issues.

Under the old system there were people without a LD who had an autism diagnosis rather than Asperger Syndrome because Asperger Syndrome was only for those without a LD and without a language delay as a young child. Those who had a language delay as a young child but had an IQ over 70 were still diagnosed with autism.

@Pira progress is about far more than academic progress or behaviour. Sadly schools often say DC don’t need/won’t get an EHCP, but parents go on to successfully apply themselves. Not all with ASD/ADHD will need an EHCP, but you have nothing to lose by applying.

The provision in EHCPs is taken from assessments so what is included depends on them. From your posts I would suggest OT (including sensory OT) and SALT (which is about more than the ability to speak) would be helpful.

Also things like regular movement breaks, a wobble cushion, sensory bands on chair legs or exercise/peanut ball or a rocker/bouncy chair, time out card, social skills support, instructions written down, checking DS has taken in instructions, placement within the classroom. You don’t need an EHCP for these, but the only way of guaranteeing it is via an EHCP.

Even without an EHCP the school must make their best endeavours to meet a pupil’s SEN, which is about far more than just behaviour and academics.

The EHCNA also often highlights hidden needs because no one can truly know all needs without a comprehensive assessment. To give an example, everyone thought DS3 had an excellent memory, and he does have a superb long term memory, but that was masking a very poor working memory that was contributing to some of his difficulties.

An EP assessment would be part of an EHCNA. Personally, unless money is no object now I wouldn’t seek an EP assessment prior to applying because if e.g. the LA agree to assess but not issue any report will be out of date by the time you get to an appeal hearing. Reports used to be considered up to date for around 2 years but over the last few years SENDIST have considered reports much younger out of date. It may also be that the LA’s EP is OK but you need to prioritise independent SALT and EP.

For those who have children who are unable to manage basic daily tasks, not just cleaning themselves but adult tasks such as money management, managing a home. What provision do you have in the event of your death?
apologies for the morbid question I’m trying to sort a will and plan for the reality there is no family member who could help.

My auntie was a single parent and really worried about this. She ended up finding a group home/supported living before she died where my cousin still lives. I don't know the exact terminology for it. He is able to come and go with friends/relatives, has privacy and does his own washing etc . I know that's not right for everyone but just wanted to answer you.

I think he has a trust which pays for big things like rent.

@JustKeepBuilding Thanks, this information is invaluable. You are absolutely correct; I have nothing to lose by applying, other than irritating the school, which I don't care about if it means DS gets support he may need!

I guess the first step is to apply for an assessment from the LA? Is this correct, an EHCNA?

Sorry, I realised this has gone off topic slightly!

@Pira yes, the first step is to request an EHCNA. IPSEA have a model letter you can send the LA.

@Merrymumoftwo my DSs who won’t be independent are still young teens but we set up disabled person’s trust in preparation.