Aspergers,ASD,SPD,Statement,Diagnosis Want to Swap Horror Stories Re Education????

[morethemerrier]

Hi All!

After a very long struggle, four schools, countless meetings, expulsion ( at the age of 5!), lots of tears, anger, frustration, social services, ( long story,will elaborate if thread picked up!), we have now been told that our DS has Aspergers, yet to be diagnosed, but highly probable.

So, my question, to all other mumsnetters out there is, how many of you have had to endure the horrific treatment that we have?

He was our first child, so we had no comparison, I would be interested to hear other peoples stories as I really think there needs to be a better process for identifying the needs of children who are outside the box!

I have no experience of a dc with aspergers but my brother had it was eventually diagnosed at about 14. After about 4/5 years of being told he was a naughty boy and had mental problems etc etc(was even put in specialist hospitals for that reason) My parents had problems with schools as they just didnt understand one of the schools even refused to allow me out early to see my db we are very close!
There does need to be a better process for identify the syndrome, unfortunately it isnt extremely well known off and doctors are reluctant to diagnose or were in my experience.
hth sorry if it doesnt

I am going through "the process" of getting my ds a diagnosis...

this is not something I could generalise about, when I read about other peoples' experiences on mn, I feel shocked at the lack of help and support they and their dc are getting, it is not my experience.

My ds came to the attention of the concerned professionals, when he was 2 years old. I was oblivious to anything being wrong, in fact I didn't think my ds had any problems until he started ms nursery.

I have had lots of support, and as much help as they can give and all whilst being in complete denial.

I hope your ds, and you, are going to get the help you need now.

once my db got a dianosis it was much easier to deal with school etc as they were aware why he behaved the way he did. I think aspergers has so many different ways it exposes itself. Ive heard other peoples stories of it and are so dfferent to my db but some if a few similarities

our eldest is now 4.3, was diagnosed with ASD when he was 2.4. He is HFA and has some language, his cognitive skills are age appropriate (he's a bright little poppet!) which means that he doesn't fit into any of the boxes that the Local Authority has available. So far it's been nothing but a nightmare and I expect this is how it'll continue - I'm just a tad more wiser now so I know the games they play.

We requested a statutory assessment, it was refused, we appealed, we won. Statement was refused, we appealed, a few weeks before tribunal after huge pressure from us (mobilised our MP, councillors, harassed the SEN department ) they conceded. We are just filing our THIRD appeal as the statement that was issued was so inadequate it wasn't worth the paper it was written on. Our son is in a mainstream nursery which is utterly clueless, and I seem to spend my time in endless meetings that achieve very little. The nursery staff are well meaning and caring, but unfortunately a child like DS needs specialist teaching, not a few 18-year olds with a couple of NVQs between them. I grit my teeth when I hear them go 'oh he has been fine today, he really enjoys running his fingers through water, he's been doing that all day!'

I don't know what the right educational setting for him would be. I'd love for him to go into a language unit, but they do not accept children with an additional diagosis. He will start Reception in September in a mainstream primary, and we'll see how it goes, but I am prepared to homeschool if nothing else works out.

It's such a shame, isn't it! I seem to spend all my time arguing with people. But if we don't advocate for our children, who will??!

well we are still pre diagnosis although definately getting there. Been fighting since DS was 5.
Huge problems in MS, Informal exclusion used, not told about bigger issues till yr 2 although been going on since reception apparently. Asked school to apply for statement they said and ed pysch said wouldnt get one. I applied for statement and was turned down for assessment. Went to appeal and won. HAd to change MS because of breakdown in communication! Assessment for statement done and recieved 15 hours, went back to appeal but LEA issued 32.5 without a fight! DS sent to Pupil Referral Unit cos MS could not cope. MS then refuse to accept DS back.
Referred to Pead in April 2007, Pead refers to CAMHS in Dec 2007, DS assessed by CAMHS in Jan 2008 and in MArch 2008 declare DS has Severe anxiety and thats it. Submit formal complaint and a week later CAMHS say DS has ODD. Now its been accepted that DS needs further assessing due to non obvious issues with communication triad for autism!
DS currently at the PRU, MS refuse to take him back. New MS said they cannot cope so wont have him, Going back to panel to request enhanced funding to accompany statemnt and also that DS attend specialist school. LEA saying there are no specialist school sthat will suit all DSs needs except if we travel out of country, Everyone involved with DS says he needs an autistic unit attached to mainstream BUT he cannot access that unless he has a DX of ASD! Now going round in big circle trying to get DX so he can access Unit!

Huge nightmare, Huge frustration and the whole time my DS doesnt know whats happening and his anxiety levels are increasing meaning his behaviour is just getting worse!

i know i should really post on this as im in middle of a horrid battle with our school, but ive just realised my ds's are killing each other upstairs...

My story is pretty much the same as afondkiss. Didn't suspect anything wrong with ds (our third child) except he liked to play on his own. Concerns showed up at nursry at 3 year and now we are looking at diagnosis for probably Aspergers. By the way I hate the phrase 'being in denial' as I think some of the milder ASD's can be very difficult to spot in the early years. And especially if they are not in a group setting.
We have been given a lot of support (10 hours per week for ds and courses for us as parents). I do think this is to do with being in early years. There seems to be more funds directed there at the moment.

That's why I get a tad annoyed when someone posts in Behaviour and people rush to say that it's just normal. I always think parents should start the process of dx young if they have concerns. If there is nothing wrong, no harm done. If there is, there is more help for preschoolers IMHO.

My story is the reverse of nikos and aefondkiss. DS is 4.1 and has huge language problems, particularly with understanding language. It is unclear whether he has ASD or a language delay/disorder.

I had concerns about DS's speech at 2.3, was fobbed off completely until he was 3, then stuck on a 8 month SALT waiting list, and 13 months joint clinic list. A woman from neighbourhood early years came to see DS once or twice at his old nursery, but apart from that there has been NO SUPPORT WHATSOEVER. And no courses to access regarding SN unless/until DS gets a diagnosis of ASD.

finding m/s school placements to apply to was hellish - it's horrible touting your child's weaknesses round heads/teachers etc just to make absolutely sure the school is OK with dealing with that sort of SN. Neighbourhood early years AGAIN offered no support - when I phoned for advice I was told that 1)they could not help until DS had seen a paed and been referred to pre-school panel and 2)all m/s schools deal with all sn these days so she couldn't give me any pointers about schools.

after being seen at joint clinic at 4.1, in 4-6 weeks time SALT are meant to be having a meeting to arrange some proper early intervention for DS (weekly SALT in school nursery). I'm not holding my breath for anything getting arranged this school year though.

I think we were fast tracked to a SALT assessment because ds was aggressive. I know of a girl with language impairement who has been waiting 12 months.
Agree it's not fair that there are such differences across the country.

ah yes Nikos, that does make sense, I've always had this horrible suspicion that because DS isn't aggressive and is keen to conform in group situations, his needs can be easily overlooked. out of interest, what sort of courses were you sent on? were they ASD related, or more general positive parenting type ones?

I agree with nikos that people are often to quick to say 'oh but that is normal' in response to a description of potentially abnormal behaviour - often they give re assurance on auto pilot without any real consideration of what is developmentally normal. We had to push for a referral to an autism unit at an NHS hospital to get a DX - even then as it was around the time of DS2's arrival, I got the impression that 'they' were more worried about me having PND induced fantasies about autism. . Our main concern was language delay not behaviour or sleep or feeding and possibly there a belief that all ASD children must have the whole range of problems.

Seriously, don't get me started about ds' experiences in his last school. Lost count of all the lies I was told, he was actually abused in one episode, neglected most of the time, allowed to be bullied, staff had no idea about AS or how to work with it and didn't want to find out. Even getting the dx didn't help. Half the tales I could tell you wouldn't believe. I'm going now before I get into my stride...

I find hinting about legal action has helped me all along, and making it very clear that you have read the SEN Code of Conduct and know precisely what your child's rights are. Of course it shouldn't have to be like that... When I first got into all this, I naively thought that the nice women (SALTS, portage workers etc) dealing with my ASD son all wanted the best for him, just like me - I now realise that we have very different agendas. Their agenda - save the LEA money, bung my son in any old school and forget about him while making sympathetic patronising noises about "suitable placements so he can learn life skills"; My agenda: get my son the best education for his needs. I am very lucky that another mum talked me through it all before I started, so I know all the pitfalls, and now I just want to help other mums through the maze too.

amm - LEAs are getting tougher because of budgetary constraints, yes it's always been difficult but the number of SENDIST appeals is growing and threat of legal action is often met with 'go ahead then'. What really gets my goat is that they employ solicitors to fight children out of education that is their right. Agree it shouldn't be the parents' job to police the LEAs and make sure that they obey the law. They (LEAs) blatantly disregard the SEN Code of Practice if they can get away with it. Unfortunately the only route is SENDIST which takes time, and in our case they have been quite happy to see us through every appeal as the delay saves them money. Their solicitor even admitted that in most cases they don't have any intention to let it go all the way to a hearing - oh great, so you'll just have us spend thousands of pounds in expert statements and legal fees then, and waste taxpayers' money by paying your own solicitors? Brilliant thinking.

Our LEA has not even implemented DSs statement. Nothing has been done, and I have had to chase the nursery and the LA and remind them of their legal obligations. I was called into a meeting where they told barefaced lies 'oh we can't actually do all of these things but we'll do our best'. 'oh the statement will not apply until he starts school'. And so on. We are now going for a Judicial Review, and the brilliant thing is that as it is done in DS's name, he can get legal aid.

Must stop now and go feed my children...

Our experience has been really inhuman and should not have happened in a civilised world! Without a Dx ds was treated as Nt when even the least able person could tell he was not (he has learning disability, asd traits, and had little speech on starting school)! He was unofficially excluded from school before his 5th birthday, for something that would not have happened if he had been supervised (and the children teasing him stopped!) The maximum support he was given in MS was 5hours a week and for several terms he had nothing. I had to fight against the system to get a statement and a place in a lovely special school. It took 3 years! Only at 8 is he getting regular NHS S

Karen I probably would believe it!! School (that I was required by law to send my child to) and the severe neglect he suffered there harmed my child and I know what you mean by not getting in your stride - my BP has gone up just at the memory!!

I do think if you get in early there is more help - ours was initially through Surestart and the local council early years inclusion team. From chatting to other mums it seems as if problems don't arise to school it is much harder to get anything done.

Total chaos - we are on a course for communicating with children with ASD and it's brilliant and has improved my sons' behaviour quite rapidly. It is run by our specialist SALT and is based on HANEN (sp?) techniques. But the NAS run a nationwide course for parents called EARLYBIRD. Details are on their website.

I think it is very area dependent. Nikos, you are right that early diagnosis ( and being typical of that dx not complicated!)helps get every thing on track. Unfortunatly this did not happen for us despite going to the gp before ds was 2 - and surestart was not around then. Children Dx post 4 get no support at all. Without a full dx you cannot get onto courses. We could not get salt because ds did not have enough language. Then when he did reach the required level (2-3 word sentances at rising 4) we had to wait 15 months, for termly assessments only. (I paid for some private salt which taught me lots and was invaluable). The biggest problem was the wait and see apathy of the experts around us - and me believing them!

from reading this can see things might be improving, esp with early years support, and that it is very dependent on where you live.

My experience is in Scotland, and whilst I think that can have its drawbacks based on how up to date the services are, I think there is not the same pressure on the services when it comes to the sheer number of children being dx'd...

Even though we have had salt since ds was 2.6 it really hasn't been intensive, imho, so even early years support can vary hugely depending on the individual therapist. I like my ds's salt, but I don't think she has the time to commit to positively enhancing my ds's learning - I actually don't think she is that interested in speech therapy and is more interested in co-ordinating the multi-disciplinary team.

I still think I am lucky that my ds has the support he has (he is nearly 4 and has another year at school in Scotland because they don't start school until they are 5 here, usually).

He is at ms nursery, which is part of the primary he will attend, the primary school has a specialist ASD unit too. My ds gets one to one support at nursery 2.5 hours five sessions a week... if he had started school at 4 would these hours have to be increased, as he would be at school 9 a.m until 2.45p.m?

Actually at our first paed appointment recently, she wanted to wait and see for 6 months but I pushed her on that and he will be put forward for diagnosis at the end of this month. I'm still not sure he is ASD, but definitely want to know one way or the other.
I think we have been very well treated but I'm sure that's because I haven't entered the school system yet. At the moment it feels like things are on my terms, but after talking with school recently (which ds will enter in September) I felt that they like to be in control.

nikos - I can't access earlybird or other NAS courses as DS doesn't have a diagnosis. Am waiting for a SALT Hanen course to start. Did the induction end november - so only been waiting 4.5 months so far!

I have had a small amount of help through Surestart (a Hanen course NOT run by SALT, but by an ed psych and childcare worker), but Surestart gave me no help at accessing services for DS. I had virtally no help from early years. Both Surestart and early years took the attitude - ah well, the waiting list is the waiting list, there's nothing more you can do. So up here in Liverpool my experience is that pre-school services are direly lacking.

Wow! Thanks to you all for your replies, I know it may sound wrong but I am pleased to finally 'talk'to other parents who are going through the same thing.

Our ds does now have a statement which came only after finally getting him into an ASD SSC(small specailist class)as a result of yet another meeting with LEA and me mentioning that feared word discrimination.
We knew that there was something wrong when he could not get through a couple of hours at nursery without any 'incidents', this got worse into reception and he was always treated like a naughty boy, (and us bad parents who did not discipline!)I rememeber in his first few weeks at school he came home with a knot in the back of his tie,the elasticated ones, which was so tight I had to cut it off, the teacher said she did this as he kept repeatedly pulling on it?!? This is one of many 'anecdotes' that we have stored under the 'do not open file'in our heads because tbh the teachers/LEA/etc beat us with the naughty stick that we beleived them and a one point thought we were the worst parents in the world! When I think what he went through(he told me he would rather die than go to school,he was 5
We had to fight every step of the way, and were investigated for child abuse due to his inappropriate behaviour, that is very difficult for me to revisit and I will say it nearly broke me. I am only just now feeling strong enough to think of trying to implement change, as if we knew then what we now know I would not have put up with any of what we went through and if I can stop the way parents and children are treated I will do everything I can. Does anyone know what training teachers have on identifying special needs esp with ASD? Thanks and sorry for going on!

I forgot to say, my ds is now 8, he also has severe dyslexia, aspergers and to think we were once asked by a headteacher (with over 30 years exp!) do you ever say no?, this was during yet another' what do we do with the child that does not fit in the box', after detailing his routine, and looking back on it all the classic ASD traits, which she seemed to think were just an ill disciplined child getting his own way! I have always said that we manage his behaviours and aim to bring out the best in him, if outsiders who are to ignorant want to continue thinking that he is 'manipulative' another exp teachers words! Then it will be their life that it the poorer for not acheiving what we do everyday when we understand and help him shine! Reading a lot of your posts it is glaringly obvious that support varies and resources, what I can't understand is why is there not a national system? Why are children such as ours being denied the same opportunities as other children?A time for change, I can feel a letter to Gordon Brown coming on! We have found that there is little exp in MS for the challenging behaviours associated with ASD, and often results in things getting worse and our children suffering, any ideas on the best way to take on the government?

I am shocked and saddened when I read these posts.

morethemerrier, I think the vast majority of mainstream teachers unfortunately lack the experience and expertise to make inclusion work. You might get lucky and find a school that is willing to work with you. I am dreading September when DS1 is due to start Reception.

It's so awful to worry about your child. My friends who have NT children have no idea what it is like, to them school is fun, a rite of passage filled with exciting milestones. Not a source of dread and worry and a series of arguments and struggles. It shouldn't be like this.

in terms of teacher training - one school I went to, I asked the teacher showing us round about what sort of help was given to children with language problems in the classroom - her answer "Dunno, it's the teaching assistants who deal with that". . Doesn't fill you with optimism as to knowledge/awareness of other SN does it?

In terms of what to do - I've written in to the Bercow government review of SALT provision, and put forward my concerns about pre-school SN provision to a local review of health provision. Not very savvy though about what else can be done.