Worth pursuing formal DX of AS to gain help at school ?

[mjuyhn234]

I'm a long time lurker. Hoping the good folk of mumsnet can help me out. My lovely quirky DS in year 6 has always been a little bit different. He's a bit Aspie but doesn't have a formal diagnosis. He has seen various professionals over the years but no fast and firm judgements have ever been made. Feel like we've been going around in circles for years.
He's a very happy laid back chap, comfortable in his own skin and is his own person. He sees himself as like everyone else and doesn't think of himself as different (he is!). He's had an Ed Phy assessment done which supports an ASD dx but we'd need to get another professional to back this up to get a formal dx.
I worry about him starting secondary school. He's average academically, well behaved and I fear he will just fade into the background.

Do you think a formal DX of ASD will guarantee additional help in Secondary ? I'm hoping the Ed Phy report should provide the information that will help him be supported from the academic side.

Thanks for reading.

Apologies for the daft username, I got a bit fed up tring to create one that wasn't in use.

My son has Aspergers traits, he doesn't have a formal diagnosis because the consultant psychologist he saw "doesn't believe" in Aspergers!! But the support in school he has needed ( time out, quiet spaces, being let alone ( he would read in class when he had finished the work set)) was provided anyway. He didn't really want a diagnosis, as he feels it is everyone else that is out of step with him, not him with everyone else! But he is a high achieving child who has managed well academically, even if things have been rough socially. We have had bad times ( several fixed term exclusions when he reacted badly to teasing) and good ( a school librarian who opened up early so he could read in school for an hour before classes so he could calm down) but I don't know if a diagnosos would have made much difference.

*ds 16 has lots of traits but no dx
he has had all extra support in comprehensive school,he has a iap.

he just sat some early gcse s and was allowed to take them by himself and had extra time .
so a dx wouldnt change anything.*

Wfrances - this is baffling! I am being encouraged by dc's school to get a formal diagnosis in order to see if extra time can be applied for. I'd heard it was very difficult to get extra time EVEN with a diagnosis. How did you manage it without one?

I'd say push for the dx. You may not get any additional support because of it, but I'd say you have greater chance if you do have the dx than without. It also opens other doors. In my LA, only those with a dx can have access to autism outreach services, even if they have strong autism traits. This means schools can plod along blindly without implementing any autism-specific strategies. NT techniques rarely help children with autism.

Thinking further ahead, in colleges and beyond, learner support is generally focused on those with diagnosis too.

Personally, I found it easier to deal with people (especially professionals) when I could describe ds as 'having autism' rather than describing the individual difficulties. The dx carries more weight, and you might find you're taken more seriously with it formalised.

As for exam access arrangements, you don't need a diagnosis but the arrangements do need to reflect a student's 'normal way of working' within the school. However, if the school is a bit rubbish at picking up on a child's needs, they may not implement things like extra time, rest breaks, or a keyboard as they might not think it necessary. A diagnosis can help back that up. If you want to know more about access arrangements, look at JCQ website here

Ginger My son is home educated and I sorted access arrangements for him by liaising directly with JCQ and the exam centre. Schools will sometimes fob parents off because it's a faff to apply, but it needn't be. Inform yourself by reading through the JCQ link above and go to the SENCo with what they need to do to secure the arrangements. It's not as hard as they might make it sound.

OP here, thanks so much to everyone for responding, I’ve definitely been given plenty to think about. I get the feeling that I would really need to push hard for diagnosis and insist on it to get one, I would need to go in and be forceful, which I would find very difficult.... I naively thought that the decision could be made by the professionals!

DH and I have just learned to work around DS and adjust. I think DS is on the mild end of AS. I think if I pushed really hard I could get a DX but he would never qualify for a statement or the equivalent ( school SENCO advised me).

wannabe - thx for the reality check on the Ed Phy report! The recommendations in DS report all seem quite reasonable to me, nothing outlandish in there. I supposes I wanted some ‘official’ paper with his difficulties listed as it would carry more weight. He’s had to battle with the ‘lazy’ label in primary where in fact a lot of his difficulties in class probably stem from his poor processing and working memory. We had no idea it was so bad so he’s obviously learnt some strategies over the years. Given time to digest information(not always practical in class to give him the time he needs), he can usually go on to complete his work independently.

In summary, I could go for DX, without any expectations to gain anything from it, but have it in the bag for later as it may allow easier access to additional help, but no guarantees.

Else hope they it will get the support in secondary, my gut tells me he should be ok with: quiet times, support at lunchtime, time out cards etc.

Plenty to mull over.

Top tip: school SENCos have a habit of talking bollocks. There's a party line of issuing as few EHCPs as possible, because it's expensive - NOT because the child in question doesn't need it. Don't dismiss it as not necessary based on the advice of insiders to the system.

Read the SEN COP Section 9 on EHCPs and make your own judgement.
here

And please do no underestimate the difficulties that come with adolescence. Even "NT" teens can become secretive, uncommunicative and uncooperative.

If you can get a diagnosis now , it is better than waiting and needing one because everything has exploded - bad behaviour, violence, self-harm, eating disorders, social isolation etc.

Good point mummy. It's hard enough to get a diagnosis to begin with, but when children turn to teens the usual behaviours can be used as an excuse to not diagnose.

Remember too that the social gap between NT and autism widens considerably in teenage years. There will definitely be problems to face that you won't have considered yet. That dx will be a useful thing to have when the time comes to need it.

Streaky I think actually lts you that is talking bollcks! It's not pricey for schools to do anything in fact we get more funding if children have ehp's and fit criteria.
With regard to access we have lots of children who are individually assessed by an outside agency who get extra support eg reading age low.
This is no big conspiracy it's just a hard slog and you need to be specific about what You want. If it's access message me and I will send you the template.
Just remember though lots of children have ASD traits- they need to be severe enough though to warrant diagnosis.

wannabe You're probably right, and I must have imagined sixteen years of neglect throughout my son's education, and via the NHS. I have found that the more specific I have been with requests for support, the harder it has been to access it. I have been told blatant lies by all areas of the system, and budget has been quoted as the reason not to support on countless occasions.

I do know how the system is supposed to work, but I have sufficient experience to know that it rarely does. Money plays a huge part in the neglect that many children endure in schools and I'm quite surprised that you claim it doesn't.

In your experience.
Why not move to another school then? Special ed? Engage a solicitor?
You clearly have a personal axe to grind but your sweeping statement about the role of a senco and how they perform their job is wrong. Some of the senco's I know are passionate about childrens rights and access to education.

I would push for a diagnosis. When we had ours done, we were told, it may not help much, but once its done it's there all the way through their education.
I think things can get much worse at secondary school. If your son has a dx it may just help him, he might get extra help settling in, the teachers should already know about him before he starts etc. I know this should happen at a good school without a dx, but when you have maybe 400 children starting in Y7 its easy to be just another face in the crowd.

My ds got his dx late (about 14) but I wish we had pushed for it earlier. His dx is ASD, but they said he was possibly AS. As he got older the dx has helped him understand why he was different from other kids.

He once got a half day exclusion from school, which the head of year (who was not present at the time) was horrified about. He said given his dx, the situation had been handled completely wrong and that we would be justified in complaining to the governors and lea (we did not as we just wanted to put the incident behind us).

Having the dx meant my son has had a lot of extra support in his first year at uni.

I've never regretted getting DS diagnosed in Yr5. Yes, there are no guarantees but I do believe it will help, especially now when he will be applying for DSA as he starts university.

Wannabe this statement is so true "Some of the senco's I know are passionate about childrens rights and access to education." Yes some sencos are great, but some are just good at filling in forms, and others have been shoved there out of the way.

Changing schools is not that easy. Getting access to special schools is not that easy. Not everyone can afford a specialist education solicitor.
And most parents of children with SN are pretty exhausted with every day life.

Schools also change, staff leave, sometimes change is for the better but not always.

I am not making pie in the sky statments I have a child with autism and teach.
Special ed is granted if it's needed. I know it's not always the case but it's not always the best fit. It came with my sons statment and he is high achieving Aspergers and now at a mainstream sixth form.
The solicitor cost us nothing, he instructed them. They fought his case for statment and he was 10.
I know it's hard I was just trying to show that some of us aren't 'the bad guys'. If it's a reasonable and doable request re you child we try and do it.

And 'pretty exhausted' I know. I worked full time, drove six hours 2-3 times a week to see my 14 DS in a psychiatric unit and looked after two other sons whilst being a single parent.
I know tired......

We are in a similar position. I don't expect anything practical from a diagnosis, but think it would be easier in some situations to say "DS has ASD" - and then talk about his difficulties than to keep saying "he has ASD type problems but no he has no formal dx".

I suspect that there will come a point when it will seem odd to ask for help but not have a dx.

I also see adults on the MN boards seeking out a diagnosis for themselves, because even if they have coped without a dx, having an explanation for their difficulties and differences (as much as ASD explains anything) is helpful to them.

Axe to grind? Not at all. I took positive action over six years ago and withdrew my son to home educate, after he was failed by every single education professional we'd encountered, within two schools (yes, we tried changing - it didn't help because the same attitude prevailed), the LA, and my MP. By the time we got to considering legal action my son was so badly harmed by the neglect he'd endured that he wouldn't have coped in ANY school, so there was no point.

The phrase 'in good schools' has been used a lot in this thread, and that is key here. It's reassuring that you seem to work in one of the better ones that has a positive attitude towards children with SENs, and your personal experience of parenting a child with autism will no doubt have shaped the way you teach pupils with additional needs, but I can assure you this is far from the norm. What I've described here isn't just my experience - an hour on the SN boards here and elsewhere will show countless examples of much the same thing, including SENCos who don't understand the basics and teachers who really shouldn't be teachers. And yes, money is often at the root of resources being withheld but it's not the only factor - I've lost count of the examples I've come across of inadequate training, lack of awareness, and poor management from HT level. They all contribute towards children's needs not being provided for.

I don't believe you're one of the bad guys wannabe, but it's wrong to suggest that the bad guys aren't out there. Too many of us, and our children, have had direct personal experience of them and how dangerous they can be. My comment about SENCos was directed at the poster who had been advised by hers that her child wouldn't get an EHCP and this is a very common practice in schools to discourage parents from applying because LAs don't want to fund the administration. I felt she needed to be made aware that she can apply for the assessment herself and that SENCos often give this advice and are wrong. I absolutely agree with you that a great deal of support can be delivered in schools at low cost and that funding is available to cover it, but as we've said, this is what happens in 'good school's but unfortunately not all of them are.