Many children with Asperger syndrome go undiagnosed for years, some into adulthood. Even when they are diagnosed young, it is always a lottery if your child is in mainstream, as to whether the school staff have a real understanding of Asperger's beyond the stereotype. I know that my own sons suffered with this misconception that AS children were a certain 'way' and if they weren't, then they either couldn't have it or just got treated with the same strategy that worked for another child with AS - without looking at what the child her or himself needs as an individual.
Families, often depending on the area or school, find themselves blocked at every turn as they try to find the right educational solution for their child. One parent, Sema Cemal has struggled for seven years to get her son the educational services she believed he desperately needed.
In our guest post today, Sema raises serious questions about educators and local authorities' understanding of Asperger syndrome and asks why some children get the services they need while others don’t stand a chance. At the end, don't forget to add your views.
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Sema's story
I am a Chartered Psychologist and a single parent of two. My daughter is 13 and has always been happy at school; she loved primary school and is thriving in secondary school. My son is 12 and from day one he has struggled with life and school.
My son has always been a special child. He is loving and compassionate, bright and creative. At the age of one, he developed an interest in vacuum cleaners. This intensified as he got older and what initially was quirky and endearing became a consuming obsession with cleaning gadgets.
I began to notice he was different from his peers at nursery school, mainly because of his obsessions but also due to his difficulties interacting with other children, distress in social situations and his difficulty separating from me.
He was diagnosed with high-functioning autism/Asperger syndrome at four-and-a-half. I will never forget the Paediatrician’s haunting words: “I’m most concerned about his emotional well-being and mental health. Children with Asperger’s are much more likely to suffer from depression and suicidal tendencies in later life.”
I could not have known then how prophetic these words would be and how my son’s mental health would be held hostage by inexperienced educators and a local authority more focused on its budget than providing a healthy educational environment for the special needs community.
The "hidden disability" bites at home
I began to learn more about Asperger’s, the ‘hidden disability’ that would mask my son’s needs and make his difficulties ‘invisible’ in school. If a child has a physical disability, this is visible and easier to deal with. But my son was a bright child with an advanced vocabulary and staff did not acknowledge his serious difficulties coping at school.
In the first year of primary school he suffered with anxiety attacks every morning about going to school. The scariest times were when he’d threaten to harm himself. At the school gate, he would have meltdowns and I would have to physically drag him in. He was often hyper and aggressive when he got home.
The teachers assured me that he was happy and calm at school. It is a fact that children with Asperger’s ‘hold it together’ at school, trying not to get into trouble or be singled out, and then ‘explode’ when they get home. After several meetings with staff, it became clear they had no understanding of Asperger’s and soon he was punished for saying or doing things that were a symptom of his autism.
I tried moving him to a new school but he became more distressed. He hated Sundays because he had school the next day. Then the school dynamic changed; he was bullied daily by other children who called him “stupid”, “disabled”, “spastic” and teachers were punishing him for being distracted, too slow or for fidgeting.
Again, staff dismissed my concerns and made me feel like a neurotic, over-protective parent. Meanwhile, the daily fight to get my son into school and his challenging behaviour once he came home was taking its toll on my family - the atmosphere at home became unbearable.
Eventually I had to give up work – the daily stresses and the ongoing fight to meet my son’s needs became a full-time job. My days were spent calling helplines for advice, drafting letters to school, attending meetings with school staff and keeping a daily record of my son’s crippling anxieties (this would provide crucial evidence to support our case later on).
Meanwhile the anxieties increased and my son was making suicidal threats related to school. As a Psychologist I could see the severity of the problem; as a parent I felt completely helpless. I knew I had to get outside help. Our GP helped with a referral that led to an assessment by the Tavistock Centre in London who recommended weekly psychotherapy immediately.
Statementing battles
The support and validation from the Tavistock fueled me to seek an independent opinion on the situation at school. I hired a specialist solicitor who determined that the school was failing to meet my son’s needs and he needed a Statement of Special Educational Needs.
This was the beginning of a long, costly battle to meet my son’s special educational needs. I had to pay for three private assessments – Educational Psychologist (EP), Speech & Language Therapist (SALT) and Occupational Therapist (OT). Their recommendations were unanimous – my son had significant needs and needed a Statement.
Despite these expert recommendations, we had to fight the local authority all the way before we received an acceptable Statement. We had to go to Tribunal and I had to pay the legal fees and for expert witnesses to attend. We won the case. The victory, however, was short-lived.
Six weeks after the support was put in place, it was decided that this be reduced (SALT from twice weekly to once termly; OT from weekly to fortnightly) because my son was “doing so well”. I was stunned. Surely it was obvious that he had made progress during this short time because of the support and it was far too soon to reduce the support. I spent the next six months ‘fighting’ to keep the support in place.
The search for a Secondary solution
The biggest battle, however, was about to start – trying to get my son into a suitable secondary school.
I researched and visited local schools and found there was very little provision for children with Asperger syndrome. Several schools were honest enough to tell me they could not meet my son’s educational needs.
I visited the only secondary school in our borough that boasted a unit for pupils with high-functioning autism. What I found, however, was a small, cramped classroom with mostly low-functioning children that had severe behavioral difficulties. I knew my son would not cope in this environment. When I discussed my son’s Statement with the unit head, I was told they were unlikely to meet his needs.
I came across an independent school – non-specialist but with small class sizes, on-site specialist provision and a unit for high-functioning children. It was 25 miles from our home, but it seemed perfect. After a two-day taster session, my son declared he loved it and was offered a place.
The local authority, however, refused to place us at this school. Instead, it named the school in our borough that I had visited and that was obviously unsuitable. My solicitor lodged an appeal and I prepared for a second Tribunal, more expensive assessments from experts, additional legal fees and increased distress to my son. Just a few days before the Tribunal hearing we were told the local authority would place my son at the school of our choice providing I paid for the transport.
I spent the summer worrying about whether my son would be happy at this school. Whilst I was certain it was a good school, I worried about whether he could cope with the journey and whether his school phobia was so ingrained that he would never be happy in any school.
The big day arrived. The first day at his new school. An early start, we were up at 5.45am. I drove to the bus pick-up point full of anxiety.
He got on the bus happily. And he came home ecstatic.
He has been attending this school for almost a year and he loves it. Not once has he said he does not want to go to school. He has made friends, he enjoys lessons and does his homework on his own. Of course there are things he finds difficult and stressful, but staff are quick to deal with these issues, addressing them before they escalate.
As for me, after seven years of fighting, each time I receive a letter from the LA my heart misses a beat and I think the worst. The experience has definitely left me traumatized and I still have many questions:
- Why did I have to fight so hard for so long to get the local authority to meet my son’s obvious special educational needs? This is not an isolated case – I have met many parents in similar situations. Some have taken out loans or re-mortgaged their home to pay for the legal fees and professional assessments;
- Why was something so evident to independent professionals (my son’s anxiety and depression) not acknowledged in school? And why was something as serious as suicidal thoughts not addressed with the utmost urgency?
I think of those parents who are unable to fight like I did – parents who do not speak English well, who cannot navigate the system or afford the legal fees. As I celebrate our victory, I have to advocate for those left behind. It is a sorry situation when only those who have money, time and an advanced education can get appropriate schooling for their children.
Read the full article at: semacemal.wordpress.com
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Thanks to Sema for her story. Of course in September 2014, it's all change for the SEN system and parents should have access to an independent supporter - the DfE says every parent who wants one should have access. Do you think the new system will make stories like Sema's a thing of the past? Let us know in the comments.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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I do hope so Tanya but I don’t think it will improve quickly. Will parents be able to choose their independent key worker? Or will the LA choose if they are funding?
We are hoping it will improve, but if we all have the same experiences, we can make a difference
Reading this worries me so much as I fear that I’ll be having exact;y the same battle over secondary in 4 years time. I wonder if the new Bill will have changed anything much in that respect. Discussing all aspects of the child with Special Needs is a good step forward, but will mean nothing if not followed up with the correct provision 🙁
I hope that things will change – hoping our struggle will make it easier for parents about to face similar challenges
It is heartbreaking that children still have to be in a state of crisis before getting their needs met and that parents have to fight and go to tribunal to salvage the situation.
I have a 20, 17 and 14 year old with ASD and I am currently remortgaging the house to pay school fees ( Guernsey resident so no tribunal) and my boys are doing fine because I have been lucky enough to find the schools that meet their needs. To do so though one has been educated in Gloucestershire and one has spent a couple of years in Derbyshire. I now react with fury whenever anyone within the education system says ‘ oh but he is coping’ . Just coping isn’t good enough, our children should be placed where they can be happy, thrive, make progress and achieve to their potential.
I hope the new changes to the UK system help to resolve some of these problems. Guernsey hasn’t even caught up with your previous system. We currently have no means of appealing a decision taken by our education department. They won’t currently accept any independent recommendations as having any validity ‘ because the independent professionals don’t understand our education system or how we deliver services’.
Decisions are often cost-driven, but will cost the local authority much more if the child’s needs are not met early – the later the child’s needs are met the more it costs the tax payer
One day I hope that we will be able to hold to account all the so-called ‘professionals’ and Local Authorities that damaged our children so much and branded us as ‘bad parents’ in order to cover themselves. I will never forget the years of anxiety, distress, isolation, exclusion and battling the ‘system’ that my son and I had to go through before he could get the education he needs. Thankfully,
he has been there for over 2 years and now doing well. But we will never get those ‘lost years’ back and the effects still shape our lives today.
Like Sema I too am concerned for the children and families that are still going through this now.
Thank you for your heart-felt comment. I agree, we will never get those ‘lost years’ back – how do we overcome the battle, I don’t know. In my case the outcome was good, but it has left me feeling battered and determined to fight this cause.
My thoughts exactly Fiona. I often find myself hoping that, one day, we (or our children) can make a claim against the schools and authorities that have damaged them so much. I will never forget how my son and daughter have been treated and the impact it has had on them and me and their dad!
When reading this I mostly felt that I was reading about my life and that of my daughter! She is in an Independent Special School now but just when she began to thrive our LA decided to take it away because she could apparently suddenly cope with walking back into mainstream FE college at transition to Post 16! This despite school staff and professionals clearly saying she will not cope. So we are back in the tribunal process fighting an aggressive, budget only orientated LA which, I’m sad to say, has been a pathfinder authority for the new SEN reforms but shows no sign of an improving attitude to.parents of and children/young people with this type of “invisible” difficulty. I hope that the SEN reform will make a difference but it will only work if LAs change attitudes and become less driven in terms of saving money.
My experience was clearly not a one-off! So many of us are fighting! I think the thing that bothers me so much is that, even if you win one leg of the fight, you fear it will backfire and you have to start again, as in your case. Good luck – my advice is keep going and lets try to form a united alliance/front, to present our side of the battle
Thank you Sema. I totally agree that we should try to form a united alliance/front to present our side of the battle as, sadly, I’m not sure the forthcoming SEN reforms will change much immediately and may, in fact, make things worse for a while ;( Thank you too for writing about your experience as it always helps to know that there are other families battling away because sometimes it can feel very personal! In the long run, however, I hope that there will be no need for families to have to battle and I hope, like you, that I can make a difference to enable that to happen 🙂
A great guest post. Having one autistic child statemented and in SN school and one nigh functioning, unstatemented autistic child, I see both angles of the new act. It is my high functioning child I fear for most, he will be seen as “coping” and swept under the carpet and because he does not have a statement any additional support is gong to be virtually impossible to obtain. His primary school does not acknowledge his diagnosis either.
Thank you, it was quite difficult to write and at times I felt like giving up. But I feel for all parents having to live through this ordeal, it’s simply not right. Unfortunately so many educators ‘sweep it under the carpet’ but when they do that, it backfires on our families – what is kept “under control” at school becomes a major challenge in our homes; they need to become more sensitive to our childs’ needs and accept the link between home and school.
This happening all over the uk, It really depend on your location. This terrifies me 🙁
I hope my story does not make parents feel more worried. I hope it inspires others to keep going with what they believe, not give in and give up – that is what the local authority rely on. In my case, I had fantastic advice from great helplines, especially the NAS Education Helpline and IPSEA. There is great support out there, we just need to support each other.
I have had pretty much the same experience as you Sema, except that my son did not get a statement until he was 14, after trying since he was 10 to get one. I also had to get private reports done, luckily I did not have to go through tribunal, my son has been at specialist school for hf asd for 6 mths now.
I can’t see it being any easier to get a EHP plan, the only advantage for my son is that he may qualify for an EHC plan when he is 16, whereas in the old system he would lose his statement at 16 and be considered too bright to have a learning disability assessment. My concern now is that at 16 all services stop (cahms, pediatrician etc) yet he will be expected to stop in education until 18, and won’t be considered as an adult until 18.
So sorry you had to go through what I did, you never recover really, do you? I am a qualified social researcher but my career ended when I had to protect my son and ensure his educational needs were met. I am now considering doing research in the special needs field. So much is unknown with the new EHC but I believe we can make a difference. I feel it is time for us parents to unite and make a positive impact
Sema, thank you so much for sharing your story, which is so similar to many of us, I shuddered when i read your comment of how your sons mental health was held hostage. that is so true for me and 2 of my boys, but I also felt inspired Sema that regardless of money or education,of which I am lacking in both, a ferocious parent love that ‘sees’ and celebrates who our amazing children are can move mountains and win victories. We ‘must’ empower each other as parents to ensure this system changes and no one is left behind. Thank you again.
Thank you for your comments, they really inspire me to take this further. When you go through a long costly ordeal like this, it is hard to find the motivation for anything – I felt damaged, broken and alone. I am a qualified researcher and my dream is to carry out research amongst parents to highlight our story even further and with professionals to find out what they really think.
Sounds like our story, except we could only find schools that might work for our son that were far enough away that boarding was the only option. After two boarding try outs in two different schools my son was adamant he did not want to be away from home ( took 10 days for him to get back to normal afterwards). The independant schools more local to us said they couldn’t accommodate our sons needs ( though local authority said he was fine in a mainstream school). We felt our only option was to home educate. It works for now, but I worry about accessing qualifications in the future, but at least his mental health is Better now.
Can identify with this. My autistic son had a major breakdown in MS primary school due to lack of support! Consequently it wasn’t until my son developed mental health problems that people started to listen to us but it should never have got to this. To ignore my son’s needs (and diagnosis) and not provide any support, in my opinion, put my son at risk of mental health problems which is just what happened. Consequently it has taken five years to help him recover (he is in special school but repeated mini breakdowns has led to periods of school refusal). As a result he has lost out on many opportunities which makes me feel quite sad to be honest. However, through our hard work (and his courage) he is now emotionally much stronger and starting to think about college this autumn. For the first time in 16 years I feel hopeful; I just hope college can support him properly.
Oh, for those that are interested my son has an ASD, SpLD and anxiety disorder and we have a LDA 39 for him (he’s due to move to college this autumn) which was based on his statement of SEN. I have been told that the rising 16’s in our area will be a priority group for the new plans but we shall see; I don’t have a lot of confidence in our education system to say the least!
As for my aspergers daughter, things are much harder not least because the understanding of girls on the spectrum is really poor. What knowledge there is seems based on the male stereotype so it has been a continual fight for me to get professionals to recognise her difficulties. Eventually I did get her diagnosed and statemented but unfortunately there is no school in our area that can meet her needs. After two or three failed attempts (including a special school who showed no knowledge in her anxiety disorder) she adamantly refused to go back to school! I have now turned to home educating her and so far so good; her emotional/mental health is slowly improving.
Sema, reading your story was like reading about our life and I’m so sorry you and your family have had to endure the trauma of it all. Your article is very well written and certainly highlights how difficult and challenging it is trying to gain understanding from others of your child’s needs and having those needs met.
We are currently embarking upon our 3rd tribunal in a year to fight for a place for our AS 6yr old daughter at an independent specialist. The majority of our girl’s needs have been ignored by the LA and we struggle to accept that in an effort to save costs they are prepared to subject our child to the worst possible life for her with dangerously high risk to her long term mental health. It shows up the whole process for the sham and money-saving exercise that it is and you quite rightly point out that only parents with the financial ability, understanding of how processes work and mental strength are able to challenge the system. We have been forced to home educate our child for the past two years and if we lose our appeal we will continue to home educate. I have not been able to return to work since maternity leave ended and there are days when I get choked up and have to swallow any upset when my daughter asks “how long until I can go to school?”, or when I see her harming herself because we cannot get access to the therapies that she so desperately needs.
To be honest we can’t ever see it changing and we are very worried about her teenage years and beyond. Meanwhile I’m home educating, caring, letter writing, researching, filing, making phone calls and trying to ensure my daughter is OK as much as can be. I don’t think I have fully accepted and adjusted yet to being a mum who has a child with special needs and the distraction of having this lengthy fight with the LA is denying me the time I need to come to terms with our daughter’s diagnosis.
Your post gives me hope that we may yet battle through and well done to you for fighting tooth and nail for your child, I know how hard that victory was fought and won.
Dear DM,
Thank you so much for your lovely response. I was extremely moved by your personal story – 3rd Tribunal in a year!!! My heart goes out to you. It is hard enough having a child with special needs (like you, I don’t think I’ve really had the time to come to terms with this, having spent so long ‘fighting the system’. It has impacted our lives so deeply – the ongoing battle to get educators to acknowledge the very real significant needs of our child and the patronising, accusing response of those educators. I believe it is all money-driven and it literally is “the last man standing”. Do educators realise what they are putting us through? Do they even care?
I hope things work out for you and I wish you all the very best. I admire you for pursuing this, and praise you highly for home-schooling.
I don’t know the details of your case, but the more written evidence you have to establish that your daughter has needs which can not be met in a local/mainstream setting, the better your chances. I kept a daily record of my son’s experience at school and behaviour at home, I dragged him to the GP whenever he had a meltdown in the morning refusing to go to school (GP wrote letters on my behalf for the Tribunal). You need to get as many professionals on your side, unfortunately it’s costly if you have to pay education specialists but this, at the end of the day, helped us enormously.
Good luck, I wish you all the very best.
Sema
Our story has been so similar to Sema….twicr over. At one point our youngest was tok stressed to attend and we had him home for a year whilst we carried on fighting. We didn’t win the placement we wanted but a different private specialist provision. This for the most part suits our youngest. Our eldest then had more issues in his specialist provision and became suicidal. We moved him to the same school as his brother and it has been a nightmare. His ststement says he should have a distraction free environment, his head teacher had told him he should learn to cope with disruptive people. He is being let down across the board. Both boys are supposed to have access to a computervto record their work, when they ask to use one they are told NO. Where do u go from here……our son id so stressed and not coping but can’t chsnge schools again 🙁
I’m so sorry to hear you are having such a difficult time. The more I hear from other parents the more concerned I become about the system. This relentless ‘battle’ to get what is basically every parents’ right – a child who is happy and settled at school – is so wrong, it’s bordering on criminal! I’m going to think about the key things that helped most with our case and write it up in my next blog. Good luck and I wish you and your family all the very best
I absolutely agree with you, it is tragic and LA’s should be more accountable. The lengthy battle takes its toll, it costs us financially and emotionally. I hope things improve for you and wish you all the very best
Just wanted to say that I have the same problem at my sons specialist school, Janet, with them not providing a laptop.(along with other problems….) Even though my son has a private OT report saying he needs a laptop. I am trying to get the statement amended to say that use of a laptop is essential, but I don’t feel as if the LA don’t really want to do anything, and are hoping that I decide to take my son out and home educate (and save them some money!)
Sema, Thankyou for putting into words what so many of us have experienced. My daughter was 13 when we finally got a diagnosis of AS, following Pathfinder LA’s refusal to assess “because her levels are above those required to meet our criteria for assessment” and “once CAMHS have dealt with her anxiety, she can return to school.” She then spent a year in a Pupil Referral Unit on medical tuition (2 hours per day) because the LA really don’t give a damn. We went to tribunal and won…but there is simply NO provision for girls with AS in my area (and many others too). Then followed a harmful year at a special school where her mental health deteriorated rapidly, resulting in me withdrawing her. Another solicitor, another tribunal to secure Education Other Than At School, an appeal for the type of home programme, LA hire a barrister, no longer entitled to Legal Aid, couldn’t fight any more, result no education for past year.
The LA have acted against the best interests of my daughter at every step. Whilst my friends admire my determination and persistence, I feel as her mother I had no choice. Battling the system has controlled our lives for 6 years. I had to give up my job due to stress. I am no superwoman, I just wanted my daughter to receive an appropriate education suited to her needs. The LA have a different agenda. It is tragic that families endure this on a daily basis and time for LA’s to be held to account.
You must be totally exhausted after this, my heart goes out to you and your family. Costly battles for what? It probably costs the LA more to fight a parent than to listen to what they have to say. What will it take to change the system? I wish you all the best and hope things work out for you.
I am feeling sad on many levels. The posts above could be written by me. My daughter has not been at school this year. She had a late diagnosis of AS 18mths ago. I feel a bad Mum for dragging forcing etc her to school just so her mainstram school could get the attendance marks. We have been throught hell as a family but what my darling daughter has been through is so much worst. Running away from school, dreadful self harm, Anxiety, depression, stess. She said she felt like and alien. Bullying, no friends, left out of social events which she would love to be included in but hardley ever asked or thought of, which up sets me (I have to be pleased that she is still with us as at times it has been so bad. My friend lost her son recently which has nothing to do with anything like this, it is so much worse for her. I still have her to fight for) . I have had to go thru the statment process alone in 29days as the school couldn’t/wouldn’t do it as daughter not at school. When she was attending part time I asked the school to arrange an statment for her but was told that as she was on School Action + she would get no extra help by having a statment so they would not do it. I tried to get her into a special school locally but they would not even let me look round oit as it would be wasting everyones time as she didn’t have a statement. With high sensory levels and communication problems at huge school was a nightmare. She has now missed out on over 2 years of education and if she is placed in the school I wish her to be in, she will have only months there as she will be 16 and will have to move on. On the flip side she attends an Rural college once a week and has no problem getting up and going there. Passing all exams (forgetting to tell me theat ahe even sat them)! The educational environment is everything. Trying to shove a square peg in a round hole has got to stop. Invest now in the correct schools and the Gov will not be picking up the tab in later life with these young people unable to work, mental health issues, self harm, etc……Sorry this is so long but this is only the tip of the iceberg. Like you I worry for other families who cannot fight like I do. I have stop work too as fighting the sysmtem is a full time job as is looking after my daughter welfare. I am now helping local mum’s to do what I have done. A wonderful local Mum has set up a FB site and I have joined…we all support each other and pass info nuggets.I feel empowered but so sad and furious with the situation we are in. Also I am now avoiding friends who ‘don’t get it’ and tell me what I should do, you know …my parenting skills. I worry about the future. Keep doing what you are doing Sema, as Mums we have to fight, whilst NT Mums just bask in the glory of their kids achievements in exams etc they have no idea of the thing we have had to learn and give up…I’d just bask in the glory of a happy child in a happy school which understood AS.
What a dreadful time you have all had! I’m so sorry to hear it. But well done on getting your daughter a diagnosis- it is always the first step to help.
Don’t give up on help- the school were wrong to tell you she wouldn’t get extra help with a statement- what she would get is a proper assessment of her needs and you would be able to access those schools that require a statement to get in.
As it is, the system is changing from September and we have written many posts about this. See the tab at the top called “SEN Reforms” instead of a statement, there is an Education, Health and Care Plan which can go up to age 25 if needed. Your daughter’s mental health needs can also he covered as well as her education needs- how she needs social help (education isn’t all academic).
We also have several posts here about Autism and girls, I’m on my iPad do I can’t grab the links easily, but a search (top right) will bring them up. All the best, and do contact me if you would consider having your comment featured as a post by itself as it is a story many would empathise with.
I feel so emotional after reading your emotional story. All I can say is well done for getting this far and I am so pleased the ‘system’ hasn’t worn you down and that you are managing to help local mums too. You sound like a fantastic mum so please don’t feel bad, it sounds like you are going a great job. I also dragged my son into school for years, despite his tears, suicidal threats and attempts … As parents we rely on “the professionals” to guide and advise us but unfortunately they are working from a different agenda and often the childs’ needs come last and, well parents needs don’t really come anywhere from my experience. So sorry you have been through so much – I’m hoping the new SEND Reforms will improve things but, who knows. As you say, our stories are the ‘tip of the iceberg’. Thank you so much for sharing and we must never forget, we all have the right to get the education our child needs. Sema
Semal, I fought for 8 years to get my son a statement from Shropshire Council. I have paid for private education for 12 years to date and they only pay for his LSA for 20 hours per week. He is HF ashbergers and has social and emotional difficulties and is VERY stressed about his workload this year (year 10) I fight every single day for him to have extra time, more time to write homework down, support at unstructured times etc etc. The education system doesn’t cater for children like ours. They are seen as a “problem” and the school don’t really want to be bothered to support them. It’s a terrible and criminal state of affairs and it’s makes me feel sick that parents are going through this nightmare every day.
In Cumbria we have had Parents in Partnership for may years to support parents. Not usual for us up North to be ahead!
Parent support services can be a bit ‘hit and miss’ – so pleased things are better up North
My PPO lied to me and has lied to other parents I know. colludes with the local authority and also gives false advice or denies information eg such as regarding rights for parents to have list of schools, that sensory integration therapy exists and that it is not just private, and that we have it in this county! We have evidence of maladministration, not just rumours! We are in the North West, more likely to put our kids in PRU even if they have SEN.. this is fact!
As parents, we face this injustice and dishonesty daily – it’s just not good enough. Sorry to hear about your experience and I wish you all the very best
that’s a very helpful and uplifting article, thank you Sema (and Tania) for sharing it. I couldn’t agree more about the frustration of seeking help from a bureaucracy for an “invisible” disability.
Thank you. It was definitely worth the fight as two years on my son is so happy at school and so much more confidant and independent. I still feel anxious about what the future holds for him and worry for other parents going through a similar struggle to me especially given the difficulties with the EHCP
I am battling the same way, but the county where we live does not have a suitable independent school and he suffered PTSD at the so called independent “specialist” 20 miles away from unqualified team teach reliant staff. They boast facilities but if you look closely it is just hype and expensive marketing. The Behaviour Policy is discriminatory and .. in all the local offer is appalling. So where is a great school for a highly able child with Asperger’s and all the sensory and social communicative difficulties which beset my sensitive and gifted child? Please please please tell me where the decent schools might be found ??!
Decent schools do exist but are likely to be out of your local area and/or an independent school. I felt so depressed when I was looking for a good school for my Asperger son – but I came across a brilliant one several miles away, although it took a lot of time and effort. I would continue looking/doing online searches and calling some of the education helplines (Ipsea, NAS education helpline) – there are school search lists and once you’ve narrowed down your search, visiting the schools helps. Good luck
I needed to read this today, as I’m just about to appeal a notice in lieu for my son. I’ve had a wide range of thoughts and feelings about the whole process. reading reports from the LEA have left me feeling I am making my sons’ difficulties up! What hit the nail on the head for me, is the lack of taking children’s emotional and mental health seriously. I
t has been mentioned in various reports, that it needs careful monitoring etc, but nothing has been done about it. Statements from private reports have been skewed, and I have been made to look like an over anxious mother!
Good luck and keep up the pressure for what you want in the plan. IPSEA have good fact sheets available too. Don’t trust the LA team to get it right- stay on the ball yourself and insist you are allocated an Independent Supporter.
The most frustrating thing for parents in our situation is that we know our child has emotional needs and we end up feeling so disempowered and helpless when professionals dismiss our views and focus on our parenting skills. I tried to get as much written evidence as I could about my son’s severe mental health needs (from the GP, CAMHS, private psychological assessments) as well as a daily record of his anxieties/suicidal feelings. I found some of the helplines really helpful (IPSEA, the NAS …). Good luck with the appeal
I’m still fighting. It’s been years, as a baby I said somethings not right with my boy…..doc gave me anti depressants, he got to nursery they said we think he’s autistic. 5 years later we got the diagnosis. I’ve physically carried him into school biting, screaming, pulling my hair. I’ve had a mental break down. Locked myself in my room when he’s violent (before diagnosis) and I didn’t know why.hes been through he’ll at the hands of other children and teachers who say he’s disruptive. Latest blow his statement ehcp was turned down yet his school report says he needs adult help or he won’t do anything 🙁 I’m tired so tired of fighting for him 🙁
I’m so sorry to hear about your continuing battles with the so-called ‘professionals”. Since I wrote up my story, I have heard from so many parents who have been through or are going through a similar journey to ours – it’s so scary to think of so many carers going through a rough time to try to get their childs’ needs met only to be given anti-depressants and told to improve their parenting skills. This is so wrong. I really do understand how difficult it can be to keep going/fighting/battling with “educators” but please don’t give up – reach out to parents like us and professionals who know what you are going through and can really help you ‘win the fight’ (there are so many excellent helplines out there – the NAS Education Rights Service offer really good confidential/free advice line). We are here for each other and I wish you all the very best. I’m just wondering, with all the strong evidence, how he was turned down for an EHCP despite the strong evidence to show he has needs? Did the LA carry out a needs assessment of your son?
The teachers assured me that he was happy and calm at school. It is a fact that children with Asperger’s ‘hold it together’ at school, trying not to get into trouble or be singled out, and then ‘explode’ when they get home. After several meetings with staff, it became clear they had no understanding of Asperger’s and soon he was punished for saying or doing things that were a symptom of his autism.
Are you for real? Every child with Aspergers is different.I did not hold it together at school, and I was sent home most days. You have the wrong facts!
In our case and in so many other cases, a child with Asperger’s often holds things in during the school day and has meltdowns at home – the difference in behaviour between home and school can be huge. But, as you say, each child is different and unique in the way they deal with things.
I struggles to hold it together at primary school, I was a lot better at main school, due to maturing. At home I held it together due to strict discipline, but outside of home and school I went beserk.
Thanks for sharing. My son needs structure but not strict discipline – I find that the stricter the routine, the more he needs to unwind at home
No child needs strict discipline, but some discipline of course. I had discipline at home but not at school.Maybe this is why I was out of control at primary school until age 11.
Hi my son has autism ADHD dyspraxia etc. and severe LDs. He holds it in at school and at home he is violent and sexually aggressive. We have a lot of ‘incidents’ with him. He needs constant watching and entertaining. He has made home life very difficult. We are now trying to get him a residential autism school but have had to get legal help. We’ve been through hell with social services, the school etc. It’s very frustating when professionals don’t want to listen to you.
Hi, yes, it is. Hope you get what your child needs soon
Th ed pych came in the other day for my son and said my son has aspbergers, my son does not have a learning disability however we have the problem of huge meltdowns before or after school, ed pych has said we will not get an ehcp yet a friend that is a senco said he will be entitled to one if he gets his diagnose offically off the peadatrician??? can anyone point me in the right direction here please? Also Thomas Jones just because you diddnt does not mean others cant or can!!!!
An EHCP is needs-based, not given out for any particular diagnosis. Ask your school SENCo how they think they can meet your son’s needs from within its delegated budget using the Assess, Plan, Do, Review cycle. If they feel – and can show – this would be insufficient, ask them to support an application for a plan – but they would have to prove that they haven’t been able to meet his needs using their existing resources.
As to a formal diagnosis, you would need to consult a paediatrician or child psychiatrist. You can ask for a referral to either via your GP. Referrals to psychiatrists are usually made to the CAMHS service, which often have a long wait. I would ask for a paediatrician in the first instance. Good luck.
I think the first step would be to get an official diagnosis from a paediatrician or child psychologist – as Tania says, a referral can be made through your GP but this can take time due to long waiting times. Do you have any documentation/written evidence about your son’s needs and the necessary provision to meet those needs such as assessments/reports from school, educational psychologists, speech & language therapists etc.? As EHCP’s are needs based, if your son’s needs are not being met at school and the evidence proves he needs additional support/provision, you are more likely to get a Plan. The National Autistic Society has an excellent telephone helpline and a comprehensive website offering help and advice – worth checking out. I wish you all the best
Hi Sema, I’m based in Scotland and this article has been wonderful to read as I am in the exact scenario you were with your son. The last two years of Primary School have been a nightmare and he was at 38% attendance before a part time timetable was agreed by the medical staff I was working with to try and figure out what was going on. I have been fighting since he was a toddler although made to feel like a neurotic and bad parent by every professional and institution and even offered parenting classes by social services after I contacted them for support!hes now in a 6 week placement residential under the CAMHS service and it’s clear by week 3 he has Aspergers and the anxieties and severe pain he has been having is all connected with the poor suppor school have given him and my constant frustration at being told nothing was wrong and that he was making the pain up. The staff (speech and language, occupational health, psychiatrists) have been amazing and for the first time I feel able to breathe and start to embrace how to parent him in a way that he develops and thrives. I’m now in a horrible situation where I need to source a secondary school and in the area it’s either mainstream or non mainstream school that really cater for extreme cases and both are reluctant to accept his needs. I’m considering g home tutoring as like you I had to give up work last July and become a full time Mum and that has been awful but I had to accept that he needed me and his needs were more important than mine. I don’t want to let the primary school away with how they treated him and me as I would hate any other child or parent to face what we have and I will do whatever I can to raise the issue and have lessons learned and mistakes acknowledged as they have impacted on my son in ways that can never be repaired or time got back and I hate that as an institution that are supposed to protect and develop children they did they exact opposite for my son. Thank you for writing this – I came across it and felt I could change the names and location and it was our story too.
Hi Jemma – sorry to hear you are going through the same battle as I did. Our stories are so similar
and I’ve heard from so many other parents/carers who have felt undermined by the system – it seems like so many others are going through this difficult ordeal and it’s good to know that my article helped you. Thank you for your kind words and I wish you all the very best. It’s so good that you have the energy to keep going as it’s easy to give up with all the obstacles. Remember to take time out for yourself
Reading your artical was like reading my own life with my son, he is 7 and everyday is a struggle getting him to school, iv had to physically move him into the school with the staff restraining him so i could leave, its horrible and i hate to leave him in that amount of distress. His school are not helping him at all, iv found out in the last week that he has poor fine motor control, poor letter formation, slow writing speed and his writing and spelling is practically unreadable and he is working 12 months behind what he should be but iv only just been made aware even tho he has been “behind” since nursery! The school have done a report saying they see none of the challenging behaviour that i do at home and that when the senco went to observe him (for one afternoon!) he gave good eye contact and smiled (this if u knew my son is completely false and all the people who know him said the same!) The school have agreed to let him go out throughout the day for 5 mins to burn some energy off in the hope he will concentrate better yet they still say nothing is wrong! He is going through assessments for possible autism/ADHD through my gp but i believe there is more to it, he has just been offered a place in a new school and iv already spoke to the head who assures me they will help him in any way they can, all i want is for my son to have the extra help and support he needs but yet as parents we have to fight and fight to get this! I dont see a diagnosis for my son now as the school have blatantly lied on the report and it is very contradictory as it says they see no sign of ADHD or ASD but then it list all the poor fine motor etc which can be a part of these! Feel like im banging my head against a brick wall and if i could home school him i would!
It’s so wrong that we have to keep fighting like this – it’s so stressful and exhausting! Hopefully your son will be assessed soon and you will get a diagnosis and a detailed report on his needs (sensory, motor skills, emotional, social, educational) and the necessary provision to meet those needs. I hope your son will have a better experience in his new school. Good luck.
Hi Sema,
Thank you so much for writing this – it is good to know that we are not alone in this experience. My child has a diagnosis of Aspergers Syndrome and is too anxious to attend school because of how her anxiety has been handled there.
I am on my third request for an EHCP for her and pulling my hair out! Thanks again, Susie
Anxiety is something the so called ‘professionals’ just don’t understand. Shocking really, as we are not alone – so many of us experience the same thing. Third request – must be so stressful for you. Do you have written evidence of needs/your daughter’s sen? I found any written evidence helps get the LA focus on the facts. Good luck
Hi Sema,
Thanks for replying. We have given the LEA so much written evidence in the past, that this time I have just had to refer them to all the evidence they already have on file! It is very stressful. Not sure I could go through this again. We will find out this week. Thank you again
Hi Sema, I am hoping you will see this as I have just found your story. My daughter is now 9 and was diagnosed with Aspergers when she was 5. She was bullied out of school and I opted to home educate her for a while. When she was bullied, the local authority told me it was my fault as I should have prepared her better for school and bullying. When they told me this I took everything personally, I know now it wasn’t. As I am not a teacher and I would like her to eventually return to school, I very stupidly requested she have an EHCP. After 15 months it was eventually done and a school was named I raised strong objection to.
Despite the school saying they did not want her, the local authority will not ackoweledge it’s the wrong school and have now sent me a letter telling me she cannot be withdrawn from her plan and must attend the school (who do not want her) or they will seek action against me.
My little girl was bullied so much she was diagnosed with PTSD at 6. I cannot afford a lawyer who would probably be able to help me, the legal aid layer could only offer basic assistance which I am able to do myself. Things got so bad, the stress of fighting to get her what she really needs caused me to have a stroke. The doctor was very candid when he told me if I get put under the same amount of stress again, I am liable to have another stroke only next time it would probably be a major stroke.
Please can you or anyone who may read this, tell me the answer to 2 questions? My local authority have refused to allow me to home educate my daughter as they say without asking or seeing proof, she will not get what she needs at home. They have also said I must take her to the school who have expressed clearly they do not want her. Can they do both of those – refuse to let me keep her at home while her EHC is in place and force me to take her to a school whichis unsuitable?
I would be immensely grateful for any help or advice.
Thank you ?
Tracy
Hi Tracy,
I’m so sorry you’re going through such a difficult time. I can relate to your situation and really understand how much an ongoing battle like this can damage your health.
As far as I know, you are entitled to home-school your daughter providing you can demonstrate that she will receive suitable ‘efficient full-time education’ – you need to prove you can meet her needs – educational, social, emotional, medical; your case is even stronger if school confirm they can not meet your daughter’s needs. Do you have a letter from school stating that they can’t meet your daughter’s needs and giving reasons why? If not, I would ask school to put this in writing and send a copy to the LA as well as yourself. You could then write to the LA and ask them to amend the plan to record that she is going to be home educated. If you have a letter from school stating they cant meet your daughter’s needs and if you can demonstrate you can meet her needs through home education, then I really don’t think the LA can refuse from a legal point of view.
I would also ask school/the LA to set up a meeting to discuss your daughter’s needs and current educational placement – you are entitled to request an early annual review meeting if you have concerns about current arrangements. If you have not talked to the school SENco, it would be good to discuss your concerns and seek advice/his or her support on the best way forward.
The more advice you can get, the better. I contacted several helplines and got excellent advice regarding my legal rights. There are quite a few free confidential helplines including the National Autistic Society (NAS) Education Helpline and IPSEA. Although it takes a while to get through to an advisor, it is worth the wait. There are also good websites you can access online, for example Ambitious For Autism’s website has a useful document about home-schooling (Department of Education/Health’s Code of Practice).
I hope this helps you move forward and I wish you all the very best for 2017.
Dear Sema, thank you ever so much for the very constructive advice. I have been given some help now and I am hoping to get my GP on board to support her. The crazy thing is the council will waste money on meetings and throwing their weight about which they think is an effective use of resources , but think helping her settle into a school she could manage, a waste of resources! Oh praise the ‘understanding ‘ knowledge of the majority of SEN officials and their caring nature!!
Hi Sema,
Thank you for sharing your story. My 9 year old son was diagnosed with high functioning autism as Age 4 and has been attending an independent primary school since year 1. The school does not have Sen help, but he has thrived as class sizes are very small (13:1) and there are teaching assistants. He does not have a statement, but as he moves to secondary schooling, I feel he would benefit with a foucused plan. He is currently in year 5, so I have one year to work with the education authorities to assess his educational needs. Need advice on the best way to go about doing this. I have read other comments on this blog, and I do not wish to go down the wrong route, as I would prefer to homeschool my son if I cannot find a secondary school that he is happy at, and where his needs are met. Appreciate any advice
Hi Shirin,
It’s good that you are starting to think about the future needs of your son as I found it took a long time to work out what would be best for mine.
I remember when I was at the same stage as you. The most important thing I did was to get my son’s needs assessed in detail, by school and the professionals working with him as well as private independent assessments (Educational Psychologist, Speech & Language, Occupational Therapist – although costly, the reports were invaluable when it came to negotiating with the LA). You need to gather as much written evidence as you can about your son’s difficulties/needs and the provision needed to meet those needs – to provide proof to the LA as well as help you decide on the right placement for your son.
I visited as many schools as I could with a checklist of questions to find out about their special educational provision and whether they could meet my son’s needs – I looked at mainstream and special schools, state and private, local and out of borough. You need to ask the right questions and you will know which, if any, are right for your son and whether home-schooling is more suitable.
I think it is worth applying for an EHCP as this sets out in detail the childs’ needs and the provision needed to meet those needs – you can request an EHC assessment from your LA. It would be useful to talk to your School SENco for advice and recommendations, and to get him/her on side.
There are several good free confidential helplines you could contact for advice/support including the National Autistic Society (NAS) Education Helpline and IPSEA.
I hope this helps and wish you all the very best for 2017,
Hi Sema,
My Tribunal date is the 24th January 2018 and I am petrified. Jack is in year 8 and has not been in education since July, when his mainstream placement could no longer support him. Jack has Aspergers and ADHD, he is highly functioning and most of his difficulties were displayed at home until year 7. The school named is a SEMH school and in all honesty I don’t think that’s what he needs. I have named an independent school which I think he could flourish in. However LA will not budge but the school they have named is awful a frightening place to be. Jack does have an EHCP but now i’m concerned it doesn’t contain the right information. Im feeling incredibly low as Jack is sociable bright and desperate to be in school. I now feel I am failing him as well as the authorities.
Hi Michelle,
I’m so sorry you’re in this stressful situation. The EHCP sets out a child’s needs and the necessary provision to meet those needs – is there anything in the Plan which evidences Jack’s needs and demonstrates why the LA’s choice of school is not suitable. From my experience, the more evidence you have to prove that the LA’s suggested school would not be able to meet Jack’s needs, the better. Do you have any written documents from his current school or professionals working with him to support your choice of independent school. I would advise you to go to the Tribunal with as much evidence as you can, and accompanied by someone to support your legal position. IPSEA and the NAS Education helpline provide excellent support. The Tribunal date is so soon which does not give you time to organise professional assessments ( such as Educational Psychologist, Speech & Language and Occupational Therapy) to support your choice of school but it may help if you call these helplines to get advice on how to strengthen your case. Good luck and please keep me posted.
Regards, Sema