Hi, I have a 15 year old son who has been refusing to return to his special school since May. He has diagnoses of high-functioning autistic spectrum disorder, adhd and pathological demand avoidance syndrome or PDA. A recent doctoral research paper found that 69% of children with PDA have refused school at some point!

At first my local authority tried all manner of scare tactics, threatening prosecution and sending social workers round to try to talk him into going, which only served to intensify his refusal. A number of professionals have been to see him since, including his SEN caseworker (who initially refused to meet him) and a psychologist. They can see he's firmly dug his heels in.

I now have mixed feelings about whether to persevere with formal education or not. I don't feel I can send him back to his current school (a) because he is very tall and strong and wild horses couldn't drag him back if they tried and (b) he was obviously unhappy there, so it would be counter-productive anyway. However, school does provide some kind of structure and a world of learning beyond xBox and Pokemon and gives me a break!

I would like to formally withdraw him from his current school, but my local authority is refusing permission for him to be de-registered. Such permission is required because he has a Statement of Special Educational Needs naming the school. If he can't be de-registered, there's no hope of trying a new school. Also, even if he were to remain at home,the local authority has refused to consider providing a tutor because they say he should be in school. I've never had any success with trying to home-educate him myself.

I'm stumped... Any ideas...?

Welcome to our little group, Nick.

I would caution against removing your son from the school roll. Once off the list, it is very hard to get the support you and he needs. At the moment, the school has responsibility for his education. Now, it seems to be the case that they are failing to do that, but it is better that there is someone sharing that with you, than it all being on your shoulders.

'Formal education' does not have to be in a classroom scenario; it can be in small groups, or pairs; it can be at a tutor's home (increasingly difficult because of child protection issues, real or imagined); or it can be in your home.

I note that the tutor option has been refused previously. This is probably more a financial reason than the one given, going by previous posts on the site.

There are some wonderful supportive people using this site, which is generally quieter during school holidays, when the pressure is less, if not lifted entirely. I find I still lean on them when things are tough, even though my daughter is coping well generally.

Yours aye,

Simon

Hi Nick

I am glad you found us.
Sounds like things are pretty tough at your end at the moment. I agree with Simon - once you deregister your son - you are on your own - which in the long run might be something you do choose to do - but see if you can get a bit more out of the system if you can by trying other support networks to give advice.
Have you been in touch with parent partnership? They deal with this kind of thing and kids who have various issues/disorders etc and might know what the school should be doing and what you might be able to do.
www.parentpartnership.org.uk

Are you a member of any organisations for high functioning autism or adhd or PDA?
What exactly is Pathalogical demand avoidance syndrome? If a child refuses to go to school due to anxiety - do you think they are given this label or does it involve many other aspects of life as well?
The reason I ask is that many on the forum seem to find that their child often refuses to do other things - not just school - but that is a result of anxiety and the avoidance behaviour that goes with that.

The other person you might be able to contact is your local MP. Sometimes they are willing to look into a situation on the behalf of someone. And are you able to contact the department that runs the special school and see what your stand is as a parent or is the directives you have been receiving directly from the authority and not the school? You will often find that the school and education authorities do have a duty to provide education to those with special needs and that includes setting up a tutoring system if the child is no longer able to attend school. They do this for children who are more severely disabled - and they should do this for others - but they often don't have all the resources at their fingertips.

If there is a local group for children/teenagers on the autism spectrum - this might become a social outlet for your son- even if you do not get him back to school. I can understand your efforts at trying to educate him at home - my own son has no motivation when at home either. This is probably partly due to the fact that study reminds them of school - which they are avoiding. So vicious circle.
I am sorry I don't have magic answers - just know from having read so many posts over the years on here and my own son - that more often than not - the schools put it in the too hard basket and as a result the pressure mounts on the parents - so that the school doesn't get into trouble. The fact that the school does not want to de-register your son - means they should still be responsible for his education - no matter where that might take place.
Stay in touch - as Simon mentioned - its fairly quiet on here at the moment due to the break - but more should come on here soon and might be able to give you some more advice. Meanwhile - hang in there - you are doing all you can and your son probably also needs to not keep feeling so guilty. Accept where you both are now - and I am sure something will turn up for you -
Let us know how you go
best wishes
Linda

Hi, thanks to Linda and Simon for your replies. Part of the problem is that my LA decided to send my son to a residential school about 400 miles from home, meaning he gets very little in the way of family contact during term-times (though he always went home for the duration of every holiday). He just found it difficult being so isolated for 6 weeks at a time or longer, which deepened his anxieties, and he also hated certain aspects of school life; staff were very heavy-handed with restraints, for example, and he would often come home with deep cuts and bruises. Sometimes at home he has nightmares about the school; it's been tough for him, I know.

To be honest, I don't think there is anything the school could do to repair the situation now, it's really gone beyond that. But I've taken note of what you said about de-registering meaning that I'll be left on my own - that's very true, when I think about it, and it's something I may have to contemplate!

To answer your question about Pathological Demand Avoidance syndrome - it's distinct from autism, but is considered to be part of the autism spectrum. First identified by Prof Elizabeth Newson, it's been gaining wider recognition as a disorder.

The National Autistic Society defines PDA as follows:

"The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel they are not in control... People with PDA tend to have much better communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage..." etc etc. Lots of further reading available on the internet!

Lastly, you raised the question of social opportunities - a tricky one here... Generally my son doesn't like kids of his own age, or at least he has always had high levels of peer conflict. I think this relates to his disability, his pathological drive to control his environment and social interactions. He does have one very good friend though, who he tries to see regularly. "All I need now is a girlfriend" he says... ...

Hi Nick

Thanks for the info on PDA. I guess some of the symptoms do overlap with those who might not also have autism spectrum symptoms but have anxiety. The desire to avoid - or be in control can be very strong. I struggle with my son on many of these fronts - but he does not seem to have an aspect of autism (except extra sensativity to noise, lights, taste and activity). But those are also a symptom of anxiety. So a few overlaps.

Having to go to a school 400 miles away from home must have been an enormous thing for your son. I guess you are not surprised - with his issues - that being away from home and trying to cope with school became a problem. Is there nothing closer that can support him? Do you feel he needs that much care?
Having cuts are bruises from school sounds quite awful - but I don't know your son - or what you might have thought they needed to restrain him for - but even so - cuts and bruises sounds very heavy handed - especially if they didn't contact you about this? My gut feeling from hearing your story so far is that it is not the place to send him back to - but as we mentioned - staying registered at the moment may give you the link you need to request/demand/fight for home tutoring etc.

I hope someone else on here might have some further suggestions for you - as mentioned - a bit quiet at the moment as everyone is relieved during the holidays!
Take care and let us know how you get on and what road you decide to take.
best wishes
Linda

Hi Nick,

Is the school your son is at a BESD school? If so, it is likely that a PDA or ASD specific school would be more appropriate. What other options for schools are there closer to home (independent and LA maintained)?

Have you been in touch with www.sossen.org.uk or www.ipsea.org.uk for independent advice?

When was the statement last reviewed? Sounds like you need to have the statement reviewed and then you need to appeal to get a more appropriate school.

How long has he been at the school? Were you happy with the school choice in the beginning?

Sharon

Hi, thanks again for your replies.

Sharon, to answer your questions, his school is specifically for ASD though they seem to use behavioural programmes similar to what you might find in a BESD school. They use what they call "rewards and reinforcers" or what my son refers to as "bribes and blackmail". He went to a BESD school in the past, around the age of 10, and that was a complete failure but lasted about a year. He does tend to have quite challenging behaviour at school, though of course that's quite common in kids with ASDs due to anxiety.

I wasn't at all happy with the choice of school to begin with, but felt compelled to let him go and try it because it was on his Statement. I didn't let him know I wasn't happy with it, but maybe he sensed my misgivings, I'm not sure - certainly he knew I wanted him closer to home, as any parent would.

He's been enrolled at his school for two years - he threatened not to go back a few times until finally he refused absolutely. I think he just doesn't want to go residential any more, but then he had a bit of a history of school refusal at day school as well - around the age of 6 it was pretty difficult, but in those days I could almost tuck him under my arm and carry him in - not so easy to try that now!

Much of it now is to do with social anxiety and problems with his peers - common in ASD - and for whatever reason he feels bullied and harassed. The only solution the school has offered is to put him in solitary segregation for a few weeks to ease social pressures...

I would prefer him to be in a special ASD day placement but there are no ASD schools in my local authority area. I went to a tribunal last year to try to get him placed closer to home, but the tribunal panel decided that he should stay where he is / was.

Haven't tried Ipsea for advice but Sossen were fantastic and ACE advisory line is also good; both of them obviously have a lot of experience in advising about school refusal cases, and were very sympathetic listeners.

My son just had his review in late June, which was about 4 weeks after he flatly refused to go back to school. At the review the school and LA decided the school was still meeting his needs and decided not to amend the statement in any way, even in the light of his recent refusal to return. I was a bit gutted to say the least. I have no doubt he will continue to refuse into September and beyond; if I try to discuss it with him, it makes him more determined to say no. Difficult to know how to handle it...

I have been reading through a few posts on here and has been very enlightening for me. I have to say it's a very well-designed website, easy on the eyes and helpful access to very useful information.

Hi Nick,

That is a really difficult situation. And having been to tribunal, you're probably not keen to go through that again. If they have not amended the statement does that mean you do not have a right to appeal at the moment?

Are there any ASD day schools within, say, an hour's drive of you?

If your son won't go back and there is no other suitable day school, then really the LA need to provide some home tuition. Normally need a consultant's letter (e.g. from CAMHS) to say not able to cope in current school environment to get home tuition.

Perhaps worth getting county councillor and MP on side to push your case for you too.

I also found SOSSEN brilliant too. My son's 13, diagnosed ASD aged 12 after school refusal proper started. Been out of school for over a year, finally got some home tuition and a statement and have tribunal coming up - although LA have now agreed in principle to the ASD school we want.

Sharon

Hi Sharon,

Sounds like we're leading parallel lives - ASD, school refusal, LA trouble, tribunal headaches... I had a quick peek at one of your posts to find out a little bit more about your son's situation, and he sounds a lot like mine: High-functioning ASD and quite demand avoidant... My son's sleep patterns are all over the place and its no good telling him to develop normal routines or turn off his games consoles at night or anything like that. His answer to that is that he doesn't sleep at night anyway, so what's the point of asking him to turn off his games? Has a strange logic answer for everything...

My problem is he's getting into his own patterns as it suits him, which will make reintegrating him into school again (if that ever happens) all the more difficult.

As for his Statement, I have 2 months to appeal from when they decided not to amend it. I've looked into all the day schools near London but none of them will take him - it's partly his diagnosis of PDA, which a lot of schools just don't want to deal with, probably due to high rates of placement breakdown...

I'm hoping to get him home tuition but I'm not counting on it. Last time he was out of school after a permanent exclusion I had to wait ages for home tuition, and it was only put in place after a court order. Then the home tuition broke down. (Not so many smilies used on this site, but I couldn't resist...)

I was also advised to contact a councillor, which I will do; my MP is worth a try too, he was some sort of education minister at some point, a long time ago, but that may help.

Good luck with the tribunal - I guess it might not even go ahead if you have some sort of informal agreement in place? Do you think starting at a new school will help to ease the school refusal issue? I ask myself the same question.

Hi Nick

Yes, lots of similarities. I find the sleep issues really hard, it completely gets in the way of any hope of 'normal' life.

My son certainly exhibits PDA like behaviour at home, when in school he will just be quiet and do what he has to to comply.

The new school is my only hope now - but the thought of getting him started there and what might happen terrifies me! We are hoping that we won't have to go to tribunal in end, certainly I don't think LA want tribunal.

Is it worth you putting an appeal in and just describing type of school you want even though you can't name one yet and then talk to sossen when they are back in Sept. It would seem the statement as it stands is not going to be much use if you can't get him back to the school, so some change is going to be needed (even if that does turn out to be home tuition)

I can see how difficult it is trying to find an appropriate school that will take him. But they often say that once a child is in appropriate education setting the anxieties and thus the behaviour will improve. I know there are a few ASD free schools due to open, but I think the ones I can think of near London are not due to open for at least another year (e.g. The Rise School) There is a new ASD school opening in Reading this Sept. Don't know whether this is right side of London, but have you looked at Priory Lodge, Roehampton? The current head has only been there a year, so if you've looked previously it may have changed a bit. So difficult to find appropriate school, I know I looked in a radius from my house, and there are schools, but mostly just a little too far away.

Was only once my son had been out of school for a year and it was specified on statement that LA provided home tuition for us. Sometimes it was successful and sometimes not, but I suppose the positive thing is that it didn't break down completely (was just very dependent on sleep pattern and anxieties)

Definitely contact as many people like county councillor and MP (write to MP and you can also book an appt to see them at one of their surgeries) Worth writing to head of education (may be called schools and learning or the like) at your council too as it sometimes feels like SEN dept are hidden and do what they want, so get somebody above involved. And also look up who is lead councillor for education too. We wrote to all of these people and each time we did, it seemed to prod SEN dept.

Hope things are a little more relaxed for you over these summer hols - at least there is not school to worry about, but I know that all the other stuff is still hard work!