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Diagnosis of Aspergers/HFA for 9 year old son. Should I consider HE as a possible solution to all his "schooly" problems.

(17 Posts)
swanriver Thu 15-Sep-11 11:43:32

Ds2 has always managed okay at school. His writing isn't great but his classroom behaviour has always been fine. He has always liked his teachers and enjoyed structures of school. Playground difficulties increasing all the time though.
Now he's been diagnosed with HFA. He's in Year 5. I'm feeling overwhelmed by the low standard of his work (illegible writing mostly, refusal to complete tasks unless 1:1, bad presentation in general) He definitely behind what he's capable of. The Senco so far not really focusing on his academic problems, only his friendship/communication difficulties. There seems to be very little time for any one to deal with his poor levels of achievement.

Has anyone taken their ASD child out of school, and found it helped with schoolwork/communication. I'm a SAHM, and get on well with Ds2. He has lots of interests, loves trips, museums, outside etc. He has two siblings.

Just for the record, Ds2 has NOT found it easier to get on with people because he's at school all day, so school does not work as a way of socialising him...It seems to exaggerate/magnify a lot of his communication difficulties. He does find it stimulating though, I can't deny that.

Ds1 has just gone to Secondary, and I'm worrying already how Ds2 is going to possibly fit in, or do the academic work required in the way school want it done!

swanriver Thu 15-Sep-11 11:49:57

P.S. Dh thinks I'm crazy of course, but I just thought I'd see what people's experiences have been. Ds2 is being ostracised in playground at moment, and has a name for himself as being embarrassing, and occasionally violent. He wants to run around at break, and play games with others, but the only solution to all the difficulties seem to be to retreat to the Nurture Room (when what he needs is exercise) Just feeling more and more unable to know what to ask of the school, constant supervision, or a different scheme of action at playtime...

AttilaTheMeerkat Thu 15-Sep-11 12:01:01

How long would you want to home ed him for; up until the time he started secondary for instance or for longer than that?. Education Otherwise is a website you may want to look at; there is a section on there for SEN as well.

What part of the country are you in? Have you sought advice from one of the organisations out there like IPSEA, SOSSEN, ACE etc?.

If your DS wanted to remain within the school system I would be looking at applying for a Statement from the LEA now and particularly before he arrives at Secondary school. SENCO at his current school seems frankly useless and I would want to know how else they intend to support him at lunchtimes.

A statement is a legally binding document and would give him extra support re both academic and social/communication needs. It is hard though not impossible to obtain but the whole process of applying can take 6 months.

Is your DS on anything like School Action Plus currently?. What if anything have they said re his recent diagnosis?.

swanriver Thu 15-Sep-11 13:09:32

I need to speak to them as diagnosis is so recent.
He has an IEP, and they were the people to suggest he was referred for diagnosis, as they want to access some special help, and can't do it without diagnosis.
So far he is not considered anything but average (not especially bad academically) only I am beginning to notice how sloppy his work really is. He can read well, articulate, knows lots of stuff etc...

What I would like is to know experiences of HE ing ASD children. If any!!!
I suppose I imagined him leaving mainstream until he was at level to take exams, and then possibly go to sixth form college. I suppose the issue here is that he might do much better with 1:1 help from me, and doing things "his" way than within a distracting confusing school system...

swanriver Thu 15-Sep-11 13:16:34

The problem is that his work is not "bad" enough to warrant a statement, as he can read and write and talk intelligently. Nor his behaviour disruptive enough in classroom.
The problem lies in the playground, and his reaction (extreme) to doing things he doesn't like doing - extra handwriting, homework when he's tired etc...He'll just say It's Too Difficult and start screaming, so any extra curricular tuition is basically doomed.

Whereas if he learnt at home, he might be less stressed and more motivated.

Anyway...not sure...will try and talk a bit more to SENCO and IPSEA about courses of action on academic front.

AttilaTheMeerkat Thu 15-Sep-11 13:30:27

Hi Swanriver,

re your comment:-

"The problem is that his work is not "bad" enough to warrant a statement, as he can read and write and talk intelligently. Nor his behaviour disruptive enough in classroom".

So is my son re your first sentence but he still has a statement all the same. That as well sounds like you've been fed a line by someone; who told you his work was not "bad" enough?. You yourself write that his own written work is barely legible and needs 1 to 1 attnetion.

The only criteria for a Statement is need; your son's social difficulties will undoubtedly have an impact on his learning within the school environment.

Home edding may well be a viable option for you and him ultimately but it requires a lot more thought on your part. Can you really home ed him for potentially several years?. Not suggesting you cannot btw but it needs more thought (this is also why I suggested you look at the website of Education Otherwise).

Good luck with talking to the school.

Scartette Thu 15-Sep-11 14:32:53

Swanriver, your story is very similar to mine. My ds,11, was dx last february with ASD and AS and this was instigated by the school, assessed by ed. psych,etc and eventually dx with ASD and AS.I'm in Ireland so its slightly different here, but my ds behaves well at school,can read very well, absolutely fine accademically but handwriting is atrocious for his age. He also has problems with concentration, focusing etc. My older dd is now in secondary school and I must admit I'm really worried about how ds will cope with all the different subjects, timetables etc when he goes in 2 years. It is such a different ballgame! My ds is getting an hour a day 1-1 resource teaching for help with writing, social skills etc and some O.T. sessions from CAMHS but for him the social aspect of school is of huge importance. I dont know what your ds is like socially but mine has no interest in sport or any other activity outside school so school is really the only social interaction he has with his peers. I would think very seriously before going down the home ed. route. Myself and dh were told last week at a review that we must remember that handwriting is no longer considered a necessary skill and many children with handwriting issues now use laptops and take exams this way. Surely any hope your ds has at transferring successfully to secondary school will be significantly affected if he remains at home for the next 2 yrs. I know you say that socially he doesnt seem to benefit from school but surely he must ,as regards adhering to rules, turntaking, speaking in class,discipline re. homework etc- all of which are skills he will really need in sec. school. Sorry, I know this is not much help to you but our stories seem similar and I just wanted you to know that you are not alone. See if you can get the school to have more of an input or if not, as Atilla said, try getting a statement for him. Good luck!

swanriver Fri 16-Sep-11 18:13:13

Thanks, Scartette. Today I felt a bit depressed by school situation. Again.
Must make appt with Senco next week. Not that there's a proper one...hmm
All that's happened from a social point of view is that he's turned into a pariah, and is being shunned by his sister because he's "so embarrassing".
There's a residential trip in two weeks, which will make or break him sad. So many people have said this particular trip is a wonderful way for the children to show their true selves, ds is lookign forward to it. If it goes horrendously badly, I'll be in a better position to judge whether I should "let go" a bit more or keep him closer...ifysim.

swanriver Fri 16-Sep-11 18:17:14

I know people who have home edded Asperger's sons through SS. But they are acquaintances, partly of course because at the moment I don't Home Ed.. And others who are doing fine at SS with help. So just wanted a few opinions really on the Home edding front...

Probably should go to the Home Ed board shouldn't I? wink

AttilaTheMeerkat Fri 16-Sep-11 18:22:03

Hi Swanriver,

There's no proper SENCO at your son's school?. Oh dear.
His additional needs are going to have to be properly addressed now because this will all go from bad to worse otherwise with the resultant impact on your family life at home.

Are school now aware of his dx?.

If the residential trip goes badly what will you then do?.

I would start writing to the LEA and put in your request for a Statement. He needs extra support at school and the school need to start supporting him properly at break and lunchtimes. He may well be lashing out simply because he is not coping at all well in his current school environment.

Jamillalliamilli Fri 16-Sep-11 19:12:59

Hi, an ASD home edder, sent over to you. smile
It’s only now we’re out, that we can truly see how much we lived blinkered by fear through ‘only hope’, ’only way’, 'how else will he learn', etc, despite having older ones too.

Brief history: Limped through junior school friendless, separated, bullied, underperforming and the need for functional writing unaddressed, but stimulated by some lessons, keen to belong. (now know that's to anything)

Got to secondary, disasterous, other than knowing H/e couldn't be worse.

All the way through, everyone’s big concern was the social side because he was visibly bullied early, and being frank; they often have little idea about any learning needs greater than that. Whatever level a child performs at, they claim is their natural academic level. We buy into that through our ignorance. (So possibly in fairness, do they)

Social skills can be impacting on learning, but far greater is the impact of semantic language, implied meaning, weak central coherence, short term memory deficits, systemising, diferentiating relevant info, etc, etc. The level and types of differentiated learning required can be huge, hidden, and way past the knowledge and time of SENCO’s, teachers and autism outreach.

Schools also struggle to see ASD children shunned as they age, so try and make the child ‘more acceptable’ to their peers, tolerated, or ‘babysit’ as inclusion, disregarding poor long term effects on the individual in favour of ‘others learning to accept difference.’

May be harsh, but while it’s not their fault, schools are equipped to provide a ‘one size fits all’ education, that often doesn't fit, and many (not all) schools fail ASD children’s potential, leading to very difficult adult lives.

We followed blindly, only to have son eventually forced out, and had to run with the ball. Devastating at the time, but has turned out brilliant for him. smile

Things aren't done ‘his way’, in home ed, but his education's less seperated from the rest of life, tailored to enhance his strengths, overcome his weaknesses, live well in society, and teach/learn in a very different, non linear way to allow access to everything, and him to reach his real potential. (result's a changed happy still ASD lad, who’s just done well in exams.)

I have to challenge the idea school's needed to teach ‘rules, turntaking, speaking in class, discipline re. homework’ etc. It can have the opposite effect and is a modern myth we get fed, along with the idea that non functional handwriting won’t affect the modern generation. It does for many imo. Sorry.

Home ed kids turned out not to have the same views and hierarchies about difference as his old peers had, so surprise bonus has been an unexpected social life. smile
It’s been very hard work and a steep learning curve, and be warned, financially painful, but neither of us would change what we’ve done for the world. smile

If you go ask the question on the h/e board, you’ll find ASD a quiet common reason for H/E and enthusiasm for it. It may/may not be right for you, or yours, only you can work that out, by investigating more, but it certainly isn’t madness to consider if it might be a better way for your child to get both a childhood, an education, and be better fitted for adulthood. smile

PS, in agreement with Attila's posts, but statementing took 18 months from start to finish. Some LEA's can be very naughty.

swanriver Fri 16-Sep-11 22:42:24

JustGettingOn That's a wonderful post. I think it's reminded me of a lot of ways that I do connect with Ds2, and how great he is, thank you, and not to get obsessed with the wrong sort of assimilation, for want of a better word. I remember one Special Needs TA talking about her (not necessarily ASD) pupils a long time ago and lamenting that she had to spend so much time trying to get them to sit still, when really that was not what they needed - merely just what the school needed them to do... I suppose the same would be true of lots of ways the school will intervene.
I am so glad that your son got so much out of his time Home Edding. I think just knowing it is an option makes me feel much less powerless.

Thank you everyone for your thoughts, armed with them I will go forward smile Just been talking to him. He still likes school atm, just can't see why no-one likes him anymore.

AspergerFiction Sat 17-Sep-11 06:29:38

MY DD has Asperger's Syndrome. She was home-educated for most of her secondary school years. She was much happier than she ever was at school. If I am honest she learned what she wanted to, when she wanted to, with support from us. Eventually at 16/17 years of age she decided she wanted to go to college which she found easier to cope with than school.

At college she got ger GCSEs and A' levels and is now at university.

HE worked for her and I think it could for others. I do not regret our decision (now) for one moment. Although at the time I wasn't so sure.

streakybacon Sat 17-Sep-11 08:44:03

Hi swanriver.

I withdrew my ds (now nearly 13) at the beginning of Y5 so he's now been home educated for almost three years. Throughout school his AS difficulties were overlooked because he was a very bright boy, and I believe that lack of awareness of AS meant that school staff didn't recognise the extent of his problems. Like your son, he coped well in the classroom up till Y4 when things began to get more abstract and he struggled with the work. His handwriting was also poor and he produced very little output, far below his abilities. After deregistration he was also diagnosed with ADHD (for which he is now medicated) and this too added to his problems with focus and concentration. He received no relevant support while at school - everything was cheap and generic and not geared towards his specific needs, though on paper it would appear that he was well supported hmm.

When we first took him out of school he was bouncing with frustration and stress - it took a full year to calm him down and begin working on him properly. We worked (and still do) on his social and emotional development as a priority though he does have a fairly full academic timetable as well. We aim (like JustGetting), to help him to fit into society as an adult and become independent and have choices in his life. It's a balance that he just didn't get in school - we are able to look at what he NEEDS and provide it, rather than what school staff think he needs.

So far he is doing well. He too has more of a social life now that he is home educated - school was a nightmare for him, with bullying, false-friendships, taunting and no genuine kindness towards him. He was frequently so stressed at the end of the day that he wasn't able to take part in extra-curricular activities such as karate and swimming. Now he has lots of friends and clubs which he fits into with no problems. He is becoming independent and regularly catches buses and Metros into town, goes shopping or meets friends. He is calmer, more focused, can work unsupervised (when the mood takes him!). He has a busy and fulfilled life and above all he is HAPPY.

Academically you're pretty much on your own. As JustGetting said, it can be expensive as they get older, especially if you need to engage tutors (worth thinking about if you live in an area where there isn't a large HE community to arrange group lessons). You will get no financial support from your LEA, books and exam fees can be costly. For us we don't consider it an option - he was being failed in school and his mental health was at risk, and I wasn't prepared to harm him emotionally just to keep him on a school roll. This was the only choice we had to give our son a future so we don't question it any more.

With hindsight, I wish we'd deregistered years ago because it's clearly been in his best interests and now even our LEA HE advisor says he's in the best place possible. He has thrived both socially and academically with HE and is on the path to IGCSEs (he took his first in June). If he'd stayed at school I'm absolutely certain he would have had no real future but now I believe he has.

I'd recommend you get onto the MN HE board - there are some very well informed people on there who will give good advice.

Tiggles Sat 17-Sep-11 22:06:06

Not got time to read all thread.
My DS1 has severe AS - I knew he had it at age 4ish. But got dx of 'school anxiety giving AS type symptoms'. Later after we moved house he was reassessed and given AS dx at 8.

Anyhow, when he was in year1 school had got so bad I pulled him out and HE-ed him. It was the best thing I have probably ever done for him. I only HE-ed for 2 terms, after which we moved to a completely different area and found a school that suited him and he went back to school a changed child.

HEing helped him find his self-esteem. It showed him he was capable of doing the work. It showed him that although he couldn't hold a pen and write (he has hyperflexible joints in his fingers) that didn't mean he couldn't actually do the work - he could dictate I could write. He really did flourish under it and I don't regret HEing him at all. If we hadn't moved and found the right school for him (and if he didn't have 2 younger brothers) I would have loved to continue HEing him.

Dawndonna Sun 18-Sep-11 11:02:42

My story is similar to LittleMissGreen, we got dx at seven, home ed for two terms and then different school. It worked wonders for him.
He is sixteen now, he is in G&T for everything, got all As and A* for his gcses. He has a statement. A statement is not just for the academic need. He needs help with organisational skills, extra time for writing in exams, people to be patient when he interprets a question literally, etc.
Obviously, you need to look into things and make a decision, but should that decision be school based, push for a statement.

swanriver Sun 18-Sep-11 12:18:27

Thank you DawnGreen and Streaky. I see that a Statement is essential whatever path I ultimately choose, and also that the right school can make a difference.

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