High functioning autism

[li33i]

Hi everyone. Just come on here to find others who might be going through similar and hopefully find some support and advice. Our son is 4 and started school in sept. He hasn't settled there well, I have to stay with him because he couldn't bear me to leave him. 2 months passed and I'm still there. DS doesn't interact much with the other kids although seems quite happy to be around them, as long as I'm hovering somewhere in the room. Meanwhile I've become an unofficial TA. Since then I had a meeting with a behaviour expert who thinks he might have a mild autism or high functioning autism. His language skills are normal, normal eye contact and loves physical contact. He's also very bright and inquisitive always asking questions, wanting to learn even reading words now too. He's half Italian and clearly wants to learn Italian too. I guess because he can't be at school without me being there as it's too distressing and he doesn't sit still for long at carpet time they think I should seek a diagnosis. I'm just not sure it's the right thing to do for him. Yes he needs a lot of 1:1 which is another reason I stay at school (they don't have the staff!) but I have a feeling that putting a label of a disorder on this wonderful and intelligent little boy would somehow hang around him forever. Maybe we should be adapting our schooling system to cater for these bright children instead of trying to mould them into a 'normal' shape. I've looked into the therapy or assistance he might get if he was diagnosed and I just don't know if it would help or hinder his development. Some days I end up thinking I should home school him, but some interaction with other kids is essential and even though he's clearly overwhelmed by the sheer number of kids and noise in the classroom, he also seems to like them in his own way, and he has started talking about them at home a bit. I never thought starting school would be so hard. Although he always liked odd things like fans spinning his development has been normal in every way. Has anyone been through similar and what has helped for them? Be really grateful for a reply ;)) xxxx

Hi,

Sounds like we have some similarities. My DS started school last year, and had problems similar to those you describe. It was the first real clue that he had any SN, like your DS he hit every milestone in his development.

DS's school took the opposite approach to yours: they sent him home on a reduced timetable as soon as it became apparent he needed extra support, and kept him there until it looked as though they had done enough to give up, and they essentially expelled him at the age of five. Right now we are in limbo, DS receiving an hour a day of home tuition while we wait to see if we can get him a place at a special school.

Like your DS, mine is intelligent and is fine with eye contact and physical contact and makes friends to a point. I was worried about the stigma and the label a SN would bring, but someone pointed out to me that although DS has the intelligence to sit an exam, without the right support, we would be lucky if he would cope with entering an exam hall.

Obviously, the position you are in is just as untenable as mine was. You cannot continue to act as an unpaid TA for your son for the rest of his school life. What if you want/need to get a job, or you have another child? School need to be putting in extra provisions, whether or not they can "afford" it. Is your son on School Action Plus? If so, school have funding for him. If they need more funding, they need to be gathering evidence and making an application for a Statement.

What they are doing right now is the cheap option. It's also the option that will leave you with nothing if they decide to pull the rug out from under you at some point. And this, unfortunately, is a very real possibility. Have a read around on this board, you will see how often it happens. It's been a real eye-opener for me.

My DS had a diagnosis, a statement in the works, full time 1:1, had reports from every professional going and school tried to send him to a centre for badly behaved kids despite the fact that he has autism. The head promised us that he would ensure that DS could not get a place at another mainstream school anywhere local.

There was nobody who said to the school "that's discrimination, he has autism, his behaviour will never improve without the right support".

If your school doesn't want to, they won't adapt for him. If you don't have something screwed down in writing with a statement, your DS is entitled to nothing.

Actively seeking a diagnosis is a very personal decision. In my case, it was a useful one, both psychologically and in getting DS's case taken seriously. When we decided special school was the place to go, being able to say "he has autism" was useful. It also opened up a world of support outside school too. You can get a statement, DLA, and lots of support without a diagnosis of course, so it really is something you have to come to on your own.

Sorry if this sounds very bitter and cynical, but I'm a year on from where you are now and that is unfortunately how I feel. I really did think school wanted to help DS and had his educational interests at heart, but now I firmly believe they intended to expel him from the start. I'm so glad we pushed for every professional report, every intervention and every step on the path to a statement. It's meant we have a mountain of evidence to show our DS has SN and needs support wherever he ends up next.

Hi, my son is now 11 and has HFA/Aspergers. He managed to get through to Year 6 at school with inept teachers not picking up his HFA just treating him as a 'difficult' child, as a result he missed the early interventions from speech and language, OT, behaviour etc that would have enabled him to understand himself and use effective strategies to help him negotiate his path through school more smoothly. It was also have enabled us to understand him earlier and help him more effectively with his particular issues at home. We would have been able to enlist the help of professionals, friends and family through understanding exactly where his social communication difficulties lay. As it is, we have spent many years feeling confused by his inability to make friends and his apparent lack of understanding of how friendships operate.

He does not have the 'classic' signs of Autism or Aspergers, the obvious obsessions, lack of eye contact, his problems are very subtle, this is both good and bad. But the downside of this is that everyone expects him to behave like neurotypical children and they think he is being wilfully awkward, defiant or obtuse.

What is so depressing and frustrating is that his needs are minimal, he communicates well, is an A grade student, the only problem for him is anxiety around his not really understanding social interaction. He could be described as socially clumsy I guess. He's a little too frank with his opinions, and if he disagrees with teachers he will tell them for example. This creates enormous anxiety for him and when he is in an anxious state becomes fidgety and occasional blurts out in class.

We sent him to a mainstream independent school, they were informed of his dx right from the start and with class sizes of 16 thought school would not be an issue.

Shockingly, without any attempt to help him or even having discussed any issues with us, they have already put him on report. The school are totally intolerant of any of his difficulties and refuse to make any allowances for him. We think they will try to expel him.

We did not get a statutory assessment done when he was at his state primary school. For one thing we did not have enough him. By the time he was dx there was less than six months left of Year 6 - a statutory assessment takes around six months and it is likely we would have had to appeal. We deeply regret this and are now likely to be faced with trying to get a statutory assessment for him whilst he is at his private school. A situation the school are not likely to be tolerant of.

My advice is not to delay in getting a diagnosis, we were initially concerned it would stigmatise our son. But it has enabled us to fully understand his difficulties through the various reports - Ed Psych etc and means you have the right to request appropriate interventions at school and to expect him to be treated compassionately.

My own son's self esteem is on the floor as a result of not having had his needs met through understanding and not having been given appropriate opportunities to work on friendships with the kind of support our kids need.

However, if you do nothing else I would recommend getting an Ed Psych report, privately if necessary. Make sure it is a thorough report. It showed us that our son has an IQ of 133 but a slow processing speed. Which means that he is incredibly deep thinking but slow at taking in information in some situations. Classrooms being particularly problematic - teachers giving a list of instructions for a task for example. My son has trouble taking in lots of information at once, particularly when there are distractions from other kids, noises etc. This apparent mismatch - extremely bright child not getting basic instructions - confuses teachers and has led to many problems. Now we and they know what the issues for him are. (It doesn't mean they all believe it, however).

Good luck.

Thanks for your replies ;) sakoorah your son does sound similar and I'm sorry to hear you've had a struggle. I have pondered the possibility of a special school but he's so bright and in many way ahead of his class in the standard school I feel there really is no place for us. Special school not stimulating enough. State school too much. I wish there could be fully trained teachers within each school that know how to cope with high functioning autistic kids. I feel like I myself have to become an expert in order to give our son a chance at normal school. What is normal anyway fgs? If normal is being able to sit still when your 4 and listen to an incredibly boring story when there are trees to climb outside then i think I'm ok with him being sub normal. Gaa!

I agree, that would be ideal, and probably would suit my DS perfectly! Like yours, he's very intelligent and good at learning, it's just that ms is not the place for him to access any of that.

Have you had a look at your local sses? Before I visited I was concerned that DS would be bored and not stretched, but the work his class were doing would have suited him down to the ground. The emphasis was different. Instead of spending a lot of time sitting down, looking at the board or the teacher, the kids spent a lot more time outside, learning through doing and seeing. That's very much how I work things with DS at home.

Earlier in the week, a woman from the LA came to arrange DS's home tuition, and she was chatting away to him about dinosaurs. She remarked what a clever boy he was, and it made me realise how long it has been since anyone had said anything positive to me or DS in an educational setting. He doesn't deserve that.

My son has moderate autism, severe speech problems. He attends mainstream part-time and does ABA (applied behaviour analysis - a behavioural autism therapy) part-time. He attends school with ABA staff and is 7. His level of need means he needs full-time ABA support. So in effect he has a special school experience but partly in a mainstream school. The special schools around here would not be challenging enough for him as they cater for children with cognitive disabilities really - although that doesn't stop the council putting HFA kids in there instead of paying for a private alternative if they have failed at mainstream.

My point is that it is possible to get private support into mainstream schools funded by yourself or the Council. It may be a battle and a tribunal (or two), but it is possible. Its also possible to get private schools funded if you can show your child needs a smaller school. Its also possible to delay school until the term after he is 5, and by agreement flexi-school after that.

My son does 1:1 ABA in the time he isn't at school. Thats officially part of his education package not home schooling.

He learns best in 1:1 with adults, then small groups, then large groups. He's needed a lot of expert support to cope with group / school situations.

You have to find whats right for you and either fund it or fight for it.

If he needs 1:1 the school should be providing that from the SEN budget the school is given. You don't need a diagnosis, or a label, just a need.

What are the school suggesting in terms of practical support because thats not dependent on a diagnosis. Round here there is a 2 year waiting list for autism diagnosis and even then its no magic bullet to getting the right support.

What do you feel is right? I'm a great believer in trusting your own instincts about your child.

If you intend to try leaving him at school without you I would work backwards e.g. take him to school for the last 5-10 mins of the session and leave him (hopefully with school provided 1:1), then 15 mins etc etc. Build up the time slowly so he's leaving with the other kids not leaving early. Its about finding out where he's at and pitching the target for him just very slightly higher so he's successful. If he's successful, then his anxiety should improve. Its not about what the other kids are doing, its about whats the next step slightly out of his comfort zone but still achievable for him. And think about using rewards that are meaningful for him. DS earns tokens goes out of class and plays on his 1:1's phone. The school was sniffy about it but it works and he can sit much longer on the carpet now

My DS (now 15, diagnosed with Asperger’s at age 6) is highly academic and he benefitted from one-to-one support in a mainstream primary school. My DS’s reception teacher did know how to cope with children on the spectrum - it was she who first recognised his issues and she put in a lot of extra time and effort on his behalf - but she couldn’t give him the level of support he needed without extra help. The TAs weren’t specifically there to help him academically but it certainly didn’t do him any harm because they were all smart women who were quite happy to help him develop his academic interests too! And conversely the teacher who gave him maths enrichment was very aware of his issues and used to slip in some social-skills hints at the same time.

The different assessments DS had during the diagnosis really helped to pinpoint what his difficulties were and directed the right help towards him. He might have got some TA support in school anyway but the diagnosis also gave him access to other help, such as specialist social skills training to help him cope better in a mainstream class and interact better with other children, and to a playscheme with one-to-one support which he enjoyed.

By the time he started secondary school almost all his TA help had been withdrawn because he didn’t need it – or want it! – any more. But my DS still has his diagnosis for as long as he needs it, for as long as it fits him. And the older he gets, the more it is his choice whether to reveal his diagnosis or not. I know it’s a long way in the future for you but (if you do consider diagnosis) when he’s 18 it will be totally up to him who knows and who doesn’t.

If he needs 1:1 the school should be providing that from the SEN budget the school is given. You don't need a diagnosis, or a label, just a need.

That’s true in theory, but without the diagnostic assessments it’s a lot harder to show that there is a need for 1:1. It’s not the diagnostic label, it’s the process, the assessments that get done along the way that give the details about why your DS is struggling. Especially if the need is not simply academic (your son is bright!) but communication or developmental then the school don’t have the expertise to assess that need themselves and will want assessments probably from the NHS experts.

It is true that a diagnosis is not an instant passport to support in school. But diagnostic assessments are one more building block in the support structure that you are trying to build for your DS.

Thanks for sharing your stories. It's truly a minefield. Anyway I have an update on our story.. I had a meeting with the headteacher who suggests home schooling him till he's 6 and then reviewing the situation. I doubt we would get a firm diagnosis before then anyway as a lady from aspergers uk site contacted me to say its best to leave it till then because many behaviours tend to iron themselves out before then, and any diagnosis would be more stable by 6/7. So here we are. Homeschooling. Omgoodness. Where do I start?!! The LA have also contacted me to say they are fully supportive with this and have given me some contacts of local groups and websites etc. I've joined education city because DS was doing that before we left and I am thinking of investing in the jolly learning programme for phonics. However I think while he's still so little we might start by doing lots of small projects about the things he's interested in first - like helicopters and spinning things and engines etc. anyone have any advice about homeschooling? Xx

Kleinzeit your school sounds ideal ;-) Glad there are some mainstream schools out there that are making the effort. Unfortunately ours clearly did not want the hassle, especially the class teacher, who has been off sick for 4 weeks now and therefore we've had TA's running the shop, with a few temps thrown in. It's an 'outstanding' school too, it's made me realise what bullshi* the outstanding bit means. I've been sitting each day for 3 months in the reception class and could not believe how the drive is very much towards academia, ignoring completely emotions, feelings, boys tendency towards being more physical (totally ignored) and as a result I see a divide, summer born boys are getting a very rough deal in particular in schools labelled as outstanding. Most of them have already been categorized as 'naughty'. Very sad. x

li33i - I think you ought to push for diagnosis/assessment/statement. The HT has washed her hands off when she suggests you homeschool and review the situation later. Your kid is only 4. 4-6 yrs is a gold mine when he can learn with superb intervention. Pls look at VB. it is great for social skills and play skills. You should defintiely keep him in school....push the school to help you in statement and diagnosis. You are damned lucky they are allowign you to be with your boy in class....use this time to read up on VB/social skills, start putting them into practice in school while you are there with your kid. If I ahd the opportunity to be with my kid in school, I would have taken it from 0 to 10.

also, who in their right mind says you can't get a diagnosis before 6 yrs of age. My dd had her diagnosis at 3 yrs old from NHS. PUSH for the diagnosis.

Obviously, LA are supportive of your decision to homeschool as then they have to do nothing. They sit tight in their chairs and you do the hardwork.

You want to be doing social skills, not academics at all. Imagination and play skills are important too....these are the hard bits which will make dc life difficult if you don't sort it out now.

Hi li33i

Re your comment:-

"I had a meeting with the headteacher who suggests home schooling him till he's 6 and then reviewing the situation. I doubt we would get a firm diagnosis before then anyway as a lady from aspergers uk site contacted me to say its best to leave it till then because many behaviours tend to iron themselves out before then, and any diagnosis would be more stable by 6/7.

Can only reiterate what zumbaleena has stated above; if you believe any of what you have been told above then you have sucker written on your forehead. The Headteacher's comments are truly appalling but par for the course from a school that does not want your son there anyway. Who did you speak to re the aspergers?. Honestly you have again been potentially led astray here. LEA would of course be supportive because this means that they do not have to do anything to support your child's additional educational needs. Many "outstanding" schools are next to useless when it comes to dealing with children who have any form of special educational needs.

YOU are his best and only advocate here because no-one else is better placed than you to fight his corner for him. This is also because no-one else will do so.

Use IPSEA's website www.ipsea.org.uk as they are actually helpful.

Hiya, found it v sad to read about your experience and some of the misinformation you have been given. My DS got his ASD diagnosis shortly after his 3rd birthday. He is also a bright little boy but he has a severe speech disorder, struggles with change and not so much now, but has previously had major separation anxiety too. The way I see it, getting his issues investigated by the experts and eventually getting a diagnosis has enabled us to understand DS much better and put strategies in place to support him, both at home and at nursery. Obviously the next big step is school and, for my DS, I would no way accept advice to home school him without exploring other options first. Sounds like the school just don't want your DS there, which is actually exactly the message we just got loud and clear from a prospective school for our DS, when we went to talk about how they wold support his SENs, funnily enough that was "outstanding" too!

Don't know what to say really. My gut feeling is that mixing with other children has got to be best for kids as long as they can cope with it, ie with appropriate support. I guess you need to understand what your DS issues are and then work out how he cold be supported in school. As others have said, i think you need to push for diagnosis (we went to a community paed who gp can refer you to and then were referred to a social communication clinic) and also stat assessment.

Good luck