Son with Recent ASD diagnosis.

[JoeSamJack]

My son is in year 5 and recently had an ASD diagnosis following referral from the school 2 years ago. The DR wrote that it isn't a straight forward diagnosis as he doesnt have a lot of the traits, however with the diagnosis the school can apply for extra support. He does get fixated with certain things such as movies and certain dates (Xmas, Easter etc) and loses focus on school tasks, but when the subject interests him he does very well. He stims when bored but does it in private as he says he doesn't want to embarass himself, I bought him one of those fidget stimmer things so he felt more relaxed. He did very poorly in his SATs but the school say that his comprehension and reading ability is above his age. He gets some party and tea invites from mainly girls and one boy. We enrolled him in cubs a few years back which he loves. He has always been a lovely quirky boy but now we have this diagnosis I'm really worried about his future and wonder if anyone has advice? I want to keep his confidence up now he is approaching secondary school.

It's difficult to know what to advise as you don't mention his difficulties- he must have had some otherwise you'd have struggled to get a diagnosis. Does he know about the diagnosis? If not look at I am Special about how to break the news. I approach DS with the idea of high expectations, high support. He doesn't know yet but we will probably tell him soon. Our paed said most important thing is to protect his self esteem and manage the transition to secondary. He will need to be in an ASD friendly environment. Most secondary schools don't seem to be great so lots of aspies falter at transition. Mental health problems then seem to follow. Plan ahead to avoid trouble. Apply now for an EHCP specifically for secondary school - choice of school based on provision rather than distance. He may not need a specialist ASD unit but he will need teachers used to autists. Get one of your diagnosis professionals to write a letter saying they support an EHCP for secondary transfer and use this as part of the supporting evidence for your application. You may be told it's not possible by your school but it is. We got one and I think you'd succeed at Appeal if your LA argued. Getting a good school placement is probably the best thing you'll do for him. Good luck

Thanks for your reply. Is your son in secondary school yet? My sons SENCO has started the transition process into secondary so he'll have a year preparation before he starts. The support at his secondary school is good. His difficulties are organising himself, pens, books etc and staying focussed. He is well behaved and there aren't behavioural issues so he wasn't identified quickly. He isn't the best coordinated so we practice ball sports and bike rides most day and he has really come on. We don't have any input from Drs anymore, just Education specialists. We have told him and he appears fine with it.

He can also be a rigid thinker but can open up with discussion.

DS is in Y4. I applied for EHCP in Y3 as I thought it would take ages. His diagnosis came about due to eating issues mainly as school behavioural problems weren't massive. He has some friends and we were always told he was too able to qualify for help. It's just that there is a massive difference between primary and secondary. The aspies I know who entered y7 last year without specialist support ended up in CAMHS. I've had to do a lot advocating with primary teachers but I can see that's just not going to be possible with 10+ subject teachers at secondary - all with different rules,style, seating plans etc. It's not nice to hear about but I feel lucky to have had a heads up. I don't think a couple of extra visits and a map of the school is enough. Do some googling to get informed and challenge your SENCO on her track record. Speak to your target schools too - it's more about how they deal with it rather than your current setting imo. The AET has good guidance on ASD friendly environments.

Thanks for your reply, its really helpful having some extra advice. I'm based in Wales and I don't know what EHCP is (we have a different system) Is it a Statement of Educational Needs?

Just to add a positive spin. Secondary has been the making of my ds, who had significant problems at primary and a lot of support. He's just about to enter Y10 and his support has gone from LSA support in 75% of lessons in Y7 to a mentoring session once a week now. We did an extended transition and lots of visits and school are very flexible. They are not autism specialists but I'm not sure that's always a good thing as it can tend towards rigid support packages instead of recognising how very different autistic kids can be.

Thanks Polter. I spoke to our SENCO who said that most of her children have blossomed at secondary school and they have good support in place. He has another year before he starts and his school have applied for 5 hours one to one per week to help him. (He currently has 2 hours per week). I am in the process of getting his hand writing assessed, it is really poor and his work is far better when completed by computer. His reading and spelling is excellent though.

Yes an EHCP is the english system which used to be Statement of SEN. Your situation does sound promising if the new school have a good track record. I hope it goes well!

Thanks polter it is good to have some positive stories. I would love to think that DS could find a place like your DS has. I just don't take it for granted after the problems that we have had at primary and I am worrying a lot about it already. What questions would you suggest asking secondary school that we will eventually visit? Or what things should we look out for as indicators of a good placement? Two of my friends' autists haven't done well at (different) local schools this last year; neither has a specialist unit. Their schools have been very willing to help, which is nice, but they just don't seem to understand, so never quite provide effective help. Our DS doesn't need academic help - it is all the other social and emotional stuff that's outside the curriculum..... The local school with the ASD unit in our area is very flexible and has been with children before they are diagnosed as they seem to apply the same skills to their whole cohort. I wasn't aware that other unit placements are maybe more rigid, so that's good to know about.

Handwriting is our big academic problem too OP. We did Magic Link which helped with letter formation (although it is expensive I wish we hadn't wasted time and money on other cheaper but less effective systems) and DS now manages to turn out "average" writing in class when rewarded with computer time - he still attempts to avoid writing at all other times tho. We finally got an OT referral through and a trial of a NeoSmart keyboard. Initial signs are good - he was able to type up a story much longer than he would manage with pen and paper - and it really allowed him to show his good vocab, punctuation and spelling. As he was refusing to write, noone was sure he could do these other things! Might be worth looking into as well as touch typing. As we are sorting the handwriting tho, other issues with english and creative writing are starting to emerge. I got a book called "I Hate Writing Stories" and will see if those exercises help - I think the author has a child with aspergers - as I think it is a fairly common issue.

I think it's hard to say what to look for. I just got a good feel when talking to teachers and the senco. We were very fortunate on a couple of visits to be accompanied by a pupil a year older than ds with very similar needs, and got to see how they supported him for real, so it wasn't just abstract.

What helped me was not expecting, or even wanting, school to help ds's social and emotional needs. I want school to educate him, to make necessary adjustments and provide support for him to learn and be present in lessons, not provide therapy.

Our SENCO said that often children on the spectrum find secondary school easier as there is more of a structure, less play time. I think the lunch break is 30 minutes as opposed to the 65 minutes in his primary school. I've heard that adolesence is often a turning point, my son is ten so I'm keeping positive and keeping him occupied on a daily basis. Are either of your sons obsessed with anything? Dinosaurs, films etc?

Ds has really benefited from a proper timetable, primary schools are a PITA for last minute changes and not sticking to plans, which just made everything harder.

Perhaps the biggest thing is that he can choose what to do at break and lunchtimes, instead of either being forced into the hellish playground or relying on the whims of his TA. He spent most of Y7 in the library at breaks where he met all his friends! He also has an exit pass so he can go over to learning support or his tutor at any time if he's stressed. Every time there is something off timetable e.g. Sports day, he has been able to go and read or use a laptop in learning support.

My son hates sports day! Particularly painful this year as he was in the obstacle race and really struggled.

I hope you don't mind me jumping on this thread as I have a DS aged 10 too, going into Year 6 and of course we are thinking about secondary also and how to get him the support he needs. He has ASD and Dyspraxia. My big question is what's the best route to understanding and agreeing with school the best plan to support him at school? EHCP? IEP? (What's the difference!?), Educational psychologist report? School are compassionate but out of their depth I think and he isn't performing to his potential. What is the best route to get clarity on the adjustments and strategies he needs at school?

PS really useful posts about secondary experiences thank you x

Thanks polter. I think I maybe need to change my terminology. DS doesn't have a problem with academics if he's into the subject. When it is a non preferred subject he becomes uncooperative and starts acting oddly. He doesn't ask for help and instead acts up - coming no across as arrogant rather than anxious - so has been disciplined rather than helped in the past. His school are using computer time to motivate him. Non preferred subjects are writing stories/English, handwriting, PE and eating. Although that's mostly academic I've always thought of it as a social/emotional problem but it comes out in his school work....

So our support will be about advocating for him with all of his teachers. If they react calmly and with understanding things tend to work out. If they get annoyed and go head-to-head it's pretty bad for all concerned as DS is a monumentally rigid thinker!

It's quite difficult to imagine what support for this can look like - I think he needs weaning off some of the primary school supports before he gets there certainly.

Any ideas gratefully received!

Danny it takes 20 weeks to get an EHCP once you've gathered evidence and applied. So that's not going to fit into your school application timescale. If he has ASD he presumably is on SEN Support already with an IEP or Provision Map? Focus on asking your SENCO how his plan will be revised to deal with transition. Speak to the SENCO in your target schools and see what they say/offer. You could try asking to speak to parents of an ASD child in their setting about their experiences- not sure they'll say yes but you can try! I will want to know about their track record with Spectrum kids - my friend's son's school said they understood ASD but they don't really and it's taken a year to put support in place. Obviously it took a while for them to understand but I can't help thinking that if they'd had more experience things might have been put in place earlier.....

I feel like we've already had provided enough training to our current school so I'd like to hand this over to someone else in the next place!!

That sounds like it's more that the teachers need to adjust their communication to engage your ds better tartan, I do get pissed off that it's always the autistic people expected to change and learn NT ways when theoretically it should be easier for NTs to learn autistic ways (if they made the effort).

I'm glad that this thread got some helpful responses and I'll probably post throughout year 6 to get some ideas.
I wondered if children with autism typically have poor handwriting? We are having my son assessed to try and access support for him. He has some autistic traits but I feel there maybe some dyspraxia there also. It may help him to use a computer in secondary school. His work by computer is much better presented in terms of punctuation, layout etc. With written work he struggles to write on the lines and to use appropriate spacing.

I wondered if children with autism typically have poor handwriting?
Yes! It's very common it seems!

Thanks for posting this OP

Oops pressed send too soon.
Yes - motor planning/dyspraxia tendencies do seem to have a big overlap with ASD. DS has similar issues but wouldn't be badly enough affected to meet the threshold for dyspraxia diagnosis. So we do DIY OT at home which has been working quite well.

I read an interesting thing the other day that kids with dyslexia often have improvement in their reading and writing after passing a major motor milestone. We did a Listening programme to help balance which lead to DS learning to ride a bike and also say hello unprompted. Stephen Porges is trialling similar systems at the moment as part of his work on how nervous systems work/evolved. I figured if he was thinking it was useful we would give it a go! We're doing more this year and DS' coordination is slowly slowly getting better. I'm hoping the improvements in gross motor skills will flow down into the fine motor area soon!

I had pressed for DS to start touch typing with a view to using that for English/creative writing and handwriting across the rest of the curriculum. It was given lip service by the school so last year I asked for an OT referral. Finally this year we got assessed and they will recommend he gets an Alphasmart for the classroom. At secondary they would suggest a laptop. You should definitely ask about touch typing and a keyboard in class for some of the curriculum if your DS has an ASD diagnosis.

Hi there, sorry I hope you don't mind me asking tartan what listening program did you use?

Also more importantly was magic link useful, how does it work?

Does your ds have Hypermobility? It's not unusual with ASD dc, and it can cause lots of problems with handwriting. An OT can help.

Ironically I have one dc with hypermobility and another dc with ASD. My dd with ASD has beautiful handwriting! My other dd needs to type for extended writing!

Yes to handwriting difficulties (in fact if I remember rightly motor difficulties are one of the things they looked at in the ASD assessment my son had recently) but my DS has both an ASD and Dyspraxia diagnosis. Someone told me there was a big overlap in the conditions but not sure if that's anecdotal...

Thanks for your advice tartan I don't think my son does have an IEP or provision map but I will be in to see her as soon as I can once term starts!

I just wanted to add my thanks for this thread. DS is 8 and we are going through the assessment process with CAMHS. I know he may not even be autistic but one of our main worries at the moment is transitioning. Secondary is on our minds because we're about to apply for his sister Y5/6 sister. We just couldn't see how he is going to manage at all, but this gives us hope.

sel82 we have been using iLS. It's an oldish sensorimotor protocol. It takes a long time! About 6 months ago iLS teamed up with Stephen Porges and they now offer the Safe & Secure Protocol. It only takes a week! Not sure what it's aims are or whether anyone offers it in the uk yet.

Magic Link is either online or DVD lessons (or in person in North London). It uses a particular font which was more logical than the one used at our school - no lead-ins. It started with small letters (there is chanting while writing) and then moved on to contrasting sized letters, then different patterns of letters. It's very specific about when and how to join. My DS can't copy other people's movements so the specific rules really worked for him. It gave him a lot of confidence. On the other hand my DD hates it! But then doesn't really need it.... It is expensive for what it is, which makes it difficult to take a gamble on... It did work for us (with a Lego set incentive) but I can see that it might not work for everyone. I opted for the DVDs so I could sell them on after we'd finished with them.