Asperger’s syndrome – a ‘hidden disability’
My battle to meet my son’s special educational needs
This is the story of my battle to meet my son’s special educational needs, an ordeal lasting seven years, involving huge emotional stress and financial outlay. I feel compelled to put this in writing, and hope it can assist other parents going through a similar battle and help the Local Authority understand how difficult it can be for parents who have a child with special needs.
My family / My special son / Is something wrong? / Primary School / Shattered lives – living on the edge / The battle / Starting secondary school – have I made the right decision? / Why was it such a battle? / What went right? / Key questions / How schools/the LA can improve / References
I am a single parent living with two children in the Borough of Enfield. I am a qualified Chartered Psychologist with over 20 years experience in social research and consultancy. I have a daughter aged 12 and a son aged 11. My daughter has always been happy at school; she loved primary school and settled into secondary school with ease. From day one, my son struggled, with life and school.
My special son
My son has always been a very special child with a great imagination, bright and creative. At the age of one, he developed an interest in vacuum cleaners. He was fascinated by the sound of vacuums and got excited whenever he saw one – he loved the sounds, shapes and sizes of different models and soon built up a large collection of toy vacuums.
His interest in vacuum cleaners intensified as he got older – he began researching different machines (on the internet, the Argos catalogue and at stores like Curry’s) and enjoyed advising friends and family about the pros and cons of different models. Although his special interests changed over time (switching to/from lawn mowers, sewing machines, cars, Dr Who and Sarah Jane Adventures), his passion and obsession has always been cleaning gadgets.
Is something wrong?
My son always seemed to be ‘in a world of his own’, dominated by cleaning machines and products. Initially, we found this endearing, but as his world became consumed by his obsessions, the warning bells got louder and louder. The higher his anxiety levels, the more obsessional his interests became.
I began to notice he was different from his peers when he started nursery school, mainly because of his obsessions but also due to his lack of eye contact, difficulties mixing with children, his distress in social situations and his difficulty separating from me. These differences were less noticeable when he was at home, where he was free to follow his interests at his own pace, but he struggled in more structured situations and in social situations especially with other children.
I had niggling concerns that my son was different from his peers but I pushed these to the back of my mind. As time went by, these differences became more noticeable. I shared my concerns with my health visitor when he was four years old. After observing him at home, she referred him to be formally assessed by Enfield’s diagnostic team.
My son was diagnosed with high-functioning autism/ Asperger’s syndrome at four and a half years of age. I will never forget the debrief meeting with the Consultant Paediatrician and his 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 was very scared. At the time, the word ‘autism’ conjured up images of severe disabilities and I had no idea what ‘Asperger’s syndrome’ was. I was in denial for a long time and it took me years to come to terms with his diagnosis. However, I had faith in the educational system. Because of the early diagnosis, I imagined that he would get the right help at school. I felt certain that I would be supported as a parent.
The ‘void’ post-diagnosis
After the diagnosis, I was in shock and had many unanswered questions in my mind: Is my son really autistic? Was he given the right diagnosis? Would he be supported in school? Where do I go from here? Sadly, there was a total lack of support following the diagnosis. This would take its toll over the next seven years, as I struggled to get my son into school and cope with his deep anxieties and school phobia.
I tried to get follow-up support from the diagnostic team but no help was provided. After several calls and letters, I was told that I had been sent a letter inviting me to a parent support group (which I did not receive) and was told, “Since you did not bother to attend the meeting, you have missed your turn”. Despite my efforts, they did not allow me to attend another session.
I felt confused, frustrated and alone. I sought help from the National Autistic Society (NAS) and several autism helplines (some were better than others). I remember attending my first NAS coffee morning. I entered a room full of parents in similar situations and listened to distressing stories about their battle to meet their child’s needs. I broke down in tears when I talked about my son and his experiences at school. I felt overwhelmed by the support from other parents. This was a big turning point for me – I began to find out more about Asperger’s syndrome, the ‘hidden disability’ that would mask my sons needs and make his difficulties ‘invisible’ in school. If a child has a severe physical disability, this is visible and easier to identify but it is much more difficult to recognise the needs of those with Asperger’s – you can’t always tell if someone has it. As a bright child with an advanced vocabulary, staff would not acknowledge he had genuine difficulties coping at school.
School phobia and the ‘home-school’ divide
My son has always struggled to cope in primary school. Since Reception, he went through the same pattern of school phobia every single day. Each morning he had major anxiety attacks about going to school, saying “I hate school”, “Please don’t send me to that hell hole”, “I’d rather die than go to school”, “School is a prison, it’s like hell”, “School is like being in a bath full of mouse traps”. The scariest times were when he’d threaten to harm himself, grab a knife to cut himself, threaten to throw himself down the stairs or burn/bomb the school building. He began using explicit language to describe his feelings about school, writing “Fxxk School” on sheets of paper, his diary and calendar. At the school gate, he would cry, shout and have major tantrums – if I was lucky, a member of staff would help me get him into class but often I would have to physically push him in on my own. I felt exhausted and distressed after leaving him in tears. At pick up, he was often hyper and aggressive – reliving his bad day and off-loading his stressful day on to me. I felt helpless and alone, guilty for sending him to “the worst place in the world” and worried when he swore and shouted abuse.
Every time I talked to staff about his anxieties, I got the same reaction – they told 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. At school, my child was polite and tried to follow the rules, but when he got home he lashed out with a vengeance.
School No. 1
My son started primary school in 2006. His time there was traumatic. He hated going in and was in a bad state when I picked him up. After several meetings with staff, it became clear they had no understanding of Asperger’s syndrome – he was punished for saying or doing things that were a symptom of his autism. I tried to get staff to acknowledge and meet my son’s needs, but without success – teachers kept saying “He’s just naughty”, “He is being difficult”, “He was being rude”, “He’s manipulating you”, “He is just lazy”.
There was a lack of communication. Staff put him on School Action without telling me or discussing their concerns with me – School Action provides additional support for a child considered to have Special Educational Needs (SEN); parents must be informed if their child is on the School Action register. I will never forget the time when his class teacher casually told me at a parents evening “In an ideal world, he would have an individual education programme of his own”. I did not realise what she meant at the time but when I spoke to a close friend (an experienced teacher) she told me this meant he had special needs and required a curriculum designed to meet his needs.
School No. 2
I moved him to another school in 2007 hoping he would have a better experience but the same pattern of school phobia continued. He stressed about school all the time, he hated Sundays because he had school the next day and he had major tantrums every morning. The biggest ordeal was getting him into school. I felt physically sick when I left him in tears and distressed at pick-up as he told me about his difficult day – the daily ‘bullying’ by other children (being called “stupid”, “spastic”, “mental”, “disabled”, “retarded” and being hit/kicked/pushed), the unfair punishments given by staff (detentions for being distracted in class, fidgeting in assembly, slow pace of work, forgetting his school work), the “boring lessons” and the “loud noise” in the classroom, canteen and playground.
Meetings with school staff and letters did little to help; in fact they made things worse. Staff did not seem willing or able to help. They dismissed my concerns and made me feel like an incompetent, neurotic and over-protective parent, saying things like: “Don’t worry, he’s fine once he’s in class”, “He’s had such a lovely day, “He is so happy at school, don’t believe what he tells you”, “You need a good night out”, “He is just manipulating you, ignore him, he is lying”, “He’s such a good actor, once you leave he is fine”. I felt so belittled. The more I voiced my concerns, the more confrontational the home-school relationship became. The daily battle to get my son into school and his challenging behaviour once he came home was taking its toll, distressing me and my daughter as the atmosphere at home became unbearable.
Shattered lives – living on the edge
As a single parent of two children, with little support, I was not coping. The daily ritual of getting my son into school and dealing with the aftermath once came home was very difficult. The school’s refusal to accept that anything was wrong made me feel more frustrated.
To make matters worse, the stigma attached to ‘special needs’ and ‘autism’ within my own family and community and their denial that my son had special needs (preferring to question my parenting skills) made me feel I had failed as a parent.
I became very depressed. Most days, I would come home from the school run in tears, at a loss as to what to do. I felt isolated. Eventually, I had to give up work – my fight to meet my son’s needs became a full-time job. My days were spent calling helplines for advice, drafting letters to school, in meetings with school staff and keeping a daily record of my son’s crippling anxieties and challenging behaviour before and after school (this would provide crucial evidence to support our case later on).
Home life was difficult. My son spent his weekends stressing about school – dreading Mondays, saying he hates school, does not want to go, not wanting to do anything ‘fun’ because of school. This was so difficult for us, especially my daughter who felt frustrated with her brother and embarrassed by him – she struggled to accept and cope with her brother’s autism and refused to make allowances for him. She became angry – “Why is he so annoying?”, “He is so weird”, “I wish he wasn’t my brother”, “Why are you spending so much time with him?”. It was also difficult within my own Turkish Cypriot community – many of whom found it hard to accept that my son was different to his peers (“Boys should not be interested in vacuum cleaners, they should be playing football”, “You shouldn’t encourage him to clean, he’s not a girl”.
After visiting our GP, my son was referred to CAMHS (Child and Adolescent Mental Health Services) to help him with his suicidal/depressive thoughts about school. It soon became clear that CAMHS did not understand his needs and were unable to help him. They referred him to the Tavistock Centre in London, where he was assessed and offered weekly psychotherapy. Although this helped, his school phobia was getting worse by the day. After a year of psychotherapy, the Tavistock Centre recommended on-going psychotherapy for my son.
I went to an NAS coffee morning where a staff member of Enfield’s respite team was present. I broke down and luckily she talked to me about respite for my son. We were offered a morning club, which I dragged my son into every Saturday – getting him through the door and coping with his anxieties when he left was a nightmare. Eventually, we were offered direct payments so I could book a home-sitter to spend time with my son, enabling me to spend quality time with my daughter.
The underlying problem, however, was school.
I could not continue like this. I needed an independent opinion to confirm whether it was school or me. I found a specialist solicitor who requested copies of the paperwork and a cheque for £300. It was the best £300 I have ever spent. I was advised that school was failing to meet my son’s needs, that he needed a Statement of SEN and that I had a good case. I felt relieved, but daunted by what lay ahead.
This was the beginning of a long, lonely and costly battle to meet my son’s special educational needs – a battle lasting many years, involving private assessments, evidence gathering, confrontational meetings with school staff, reams of paperwork and stressful negotiations with the Local Authority (LA). My sanity was kept intact by my fantastic solicitor and a few great friends who have supported me throughout this difficult ordeal, as well as support from various helplines.
Fighting to get a Statement (4 years)
It was clear my son needed a Statement of SEN. When I approached the school for support, they told me he would never get a Statement because his needs were “not severe enough” and there were “needier” children who had been refused a Statement. I wrote to the LA requesting a statutory assessment but they refused. I instructed my solicitor to take over and he requested a statutory assessment but, once again, they refused. We lodged an appeal to the SEN Tribunal and began the painstaking task of gathering yet more evidence about my son’s needs including three private assessments, which I had to pay for – Educational Psychologist (EP), Speech & Language Therapist (SALT) and Occupational Therapist (OT). The evidence was overwhelming – my son had significant needs and needed a Statement.
The LA eventually agreed to complete a statutory assessment and, just days before the Tribunal Hearing, issued my son with a proposed Statement. However, the Statement they drafted was very poor – it did not cover all of his needs, the provision was far too general/vague and it did not include direct SALT and OT support.
Fighting to get a good Statement (1 year)
The LA refused to make the necessary changes to the Statement. We had no choice but to attend the Tribunal Hearing. This was very costly, financially and emotionally. I had to pay the legal fees to prepare for the Tribunal and for expert witnesses to attend (my solicitor, SALT and OT).
The Tribunal experience was one of the scariest days of my life. It was very formal, with three LA representatives at one end of the table and three of my representatives at the other end – a confrontational ‘us and them’ setting. The LA employed a Barrister to represent them (she had never met my son and knew very little about his needs) – she asked for an adjournment on the grounds that the LA had not assessed his OT needs. My solicitor reminded her that the LA had over two years to gather evidence. As we were waiting for the Panel’s decision, I asked my solicitor what would happen if the Hearing was adjourned and he said I would have to pay the costs again. I was relieved when the Panel decided to continue with the Hearing. I found it disturbing that the two LA representatives at the Hearing (EP and SALT) had never worked with my son on a daily basis and astonishing that no school representative was at the Hearing. The Hearing lasted all day. I felt exhausted but confident that the day had gone well.
After a long, agonising wait, we achieved the result we wanted. We had won the Tribunal and the LA was ordered to amend the Statement and provide the necessary provision including direct SALT and OT.
This victory, however, was short-lived.
The fight to keep the support (6 months)
Six weeks after the support was put in place, the LA SALT called me to a meeting. I thought it was to discuss the way forward but instead I was presented with weak anecdotal data about how well my son had done and “because he has made such good progress with the extra support” they proposed to reduce his SALT sessions from twice weekly to once termly. I was then asked to attend another meeting with the LA OT and told they proposed to reduce his OT sessions from weekly to fortnightly. I was stunned. Surely it was obvious that he had made some progress during this short time because of the support and it was far too soon to reduce the provision.
My son’s Annual Review was held during this time. It was very distressing. I thought the review was being held to discuss my son’s needs and progress, but instead the whole meeting revolved around the wording of the Statement and reducing his support.
I spent the next six months ‘fighting’ to keep the support in place. Eventually, after several meetings and letters, we reached a compromise and managed to keep most of the support.
The biggest battle, however, was about to start – trying to get my son into a suitable secondary school.
The fight to get my son into the right secondary school (1 year, 6 months)
I allowed plenty of time to research secondary schools. I did my homework and came up with 16 schools – mainstream and special, Enfield and adjoining boroughs, state and private.
The picture, however, was depressing. After visiting these schools, I realised there was very little provision for children with Asperger’s syndrome in Enfield and adjoining Boroughs. The mainstream schools I visited were far too large and did not cater for children with high-functioning autism (many were honest enough to tell me they could not meet my son’s needs). The special schools seemed to cater to low-functioning children.
The only secondary school in Enfield with a unit for pupils with high functioning autism was a failing school under special measures. When I visited the unit, it was very noisy and pupils were wandering around the classroom aimlessly. They spent most of their day in one small cramped room, segregated from the rest of the school and isolated from the other children. Most of the children in the unit were low functioning, with severe emotional and behavioural difficulties, which meant my son would not have an appropriate peer group. I was told there was no regular SALT or OT. The unit’s aim was to integrate pupils into the mainstream school as soon as possible – a large school with a confusing layout and large class sizes, I knew my son would not cope in this environment. When I discussed my son’s Statement with the head of the unit, I was told they were unlikely to meet his needs.
I came across one school that could meet my son’s needs, an independent school in Berkhamstead – mainstream, with small class sizes, on-site specialist provision and a unit for high-functioning children. I was convinced this was the right school for him. My only concern was the distance (it is 25 miles from our home, a 45 minute car journey). After a two-day taster session, my son declared he loved it and was offered a place. We named this school in the school preference form in October 2012.
The LA refused to place my son at this school. Instead, it named the school in Enfield with a unit for children with high functioning autism (the school I had visited and rejected) – despite the overwhelming evidence that this school would be unsuitable for my son (including advice from professionals working with him at his primary school).
My solicitor lodged an appeal and we started to prepare for a second Tribunal. This, of course, involved more expensive assessments (EP, SALT and OT), legal fees and additional distress to my son. We started preparing for yet another battle, gathering more evidence about my son’s needs including a report from the Tavistock Centre, his respite carers, his current school and our local MP. I was relieved when a few of the professionals working with my son agreed with my choice of secondary school (verbally but not in writing).
After months of stress, the LA finally agreed to place my son at the school of our choice, provided I paid for the transport (over £3,000 a year). The Tribunal Appeal was withdrawn in mid June 2013, eight months after we named our preferred school.
Starting Secondary School – have I made the right decision?
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 in Barnet full of anxiety: – Have I made the right decision? Will he be happy? Will he cope with the journey? Will he start stressing about school and eventually refuse to go?
It was a great start. He got on the bus happily.
And he came home ecstatic:
“I loved it mum, it’s brilliant, thank you for getting me into the best school in the world”.
He has been going to his new secondary school for almost six months and he loves it. Not once has he said he does not want to go to school. He has made friends, he enjoys lessons, does his homework on his own and often tells me about the fun things he has done. I can’t believe how happy and calm he is. Despite his long day, he loves school. Of course there are things he finds difficult and stressful, but staff are quick to deal with these issues, addressing them before they escalate out of control. Most mornings he says “Thank you mum for getting me into my dream school, I love my new school”. All my efforts rewarded in one sentence. No more pre-school anxiety attacks or post-school meltdowns.
Since starting secondary school, he has had daily merits for good behaviour, commendations for “work beyond his age” and has been entered into the school commendation book for outstanding work – something that never happened in primary school where he was rarely rewarded or praised for the standard of his work.
As he settles in, I need time to recover from the ordeal. After seven years of fighting, each time I receive a letter from the LA my heart misses a beat and I think the worst.
Why was it such a battle?
The question I keep asking myself and would like to pose to the LA is, why did I have to fight so hard for so long to get them to meet my son’s special educational needs?
This is not an isolated case – I have met so many parents in similar situations:
- Some have taken out loans or re-mortgaged their home to pay for the legal fees and professional assessments. I met a parent who managed to get her son into her school of choice after a long battle but still has to pay half the school fees and all the transport costs;
- Others who could not fight or fought and lost the battle with the LA, still enduring the agony of their child going to the wrong school and not getting the right support – receiving daily calls from school asking them to pick their child up or, worse, their child has been excluded from school for behaviour related to their autism.
I feel I am well-informed and resourceful, yet I was in despair on many occasions and felt like giving up many times. I think of those parents who, for whatever reason, are unable to fight like I did – parents who do not speak English, who do not know how to get help or who can not afford to pay the legal fees – how do they cope?
The ‘last man standing’ or, in my case, the ‘last woman standing’
I don’t think the LA carefully considered the strong evidence on my son’s needs. At each stage of our fight, the Authority used valuable resources to disprove or weaken our case and seemed to ignore the overwhelming evidence (even evidence provided by their own professionals) until it had no choice but to give in (i.e. when we lodged an appeal, at the Tribunal). So many people have told me (parents and professionals) that the LA’s primary consideration is cost, regardless of the circumstances, refusing to shift their position even if the evidence is strong. Eventually, most parents give up the fight and only a small minority win the battle.
It is the LA’s responsibility to provide a school that will meet a child’s needs and provide a safe environment for them. It is a sorry situation when only those who have money, time and an advanced education can get appropriate schooling for their children. However, given that LA’s have had substantial cuts in their budgets, perhaps the blame lies elsewhere i.e. Central Government.
What went right?
It is important to highlight things that went well and what helped us:
- An early diagnosis.
- A few outstanding members of school staff who took the time to get to know my child and recognise his potential (his learning support teacher and some of his teachers/teaching assistants).
- A few exceptional LA professionals who were honest in their assessments and not afraid to voice their views – they understood my son’s needs and provided my family with support beyond their call of duty.
- Excellent helplines which supported me with advice during my battles. The NAS Education Service was exceptional.
- Respite provided by Enfield Joint Service for Disabled Children.
- The lack of provision for children with Asperger’s syndrome is widely acknowledged. Why is there such little provision for high-functioning autistic children in Enfield? How far beyond Enfield does this problem go?
- Why something that was so evident to independent professionals (my son’s anxiety and depression) was not acknowledged in school and why something as serious as suicidal thoughts was not addressed with the utmost urgency?
- Resources are limited but is the LA making the best use of existing resources? How much does it cost the Authority to fight parental choice?
- I struggled to get my son into school, from the age of five through to eleven. You just can’t do this with older children – you can’t force them to go. Many of them are falling through the cracks, ending up depressed, alienated, suicidal or on the wrong side of the law. Surely this should be acknowledged and addressed?
- What is the cost in waste of potential that comes with ‘writing children off’ or segregating them? This costs the LA money in the long term. It also costs other parts of the system (health, housing, employment, the criminal justice system etc) when such children are not given an appropriate education. The total system costs of not providing for children with specIal needs creates a good business base for making the right investment at the outset. What is the long term cost for society of picking up the pieces (hospitals, police, the courts) and the loss of potential benefits when the skills and talents of people with special needs are not harnessed?
How schools/the LA can improve
Some facts and statistics
Without the right support, autism can have a devastating effect on individuals and families. The right support at the right time can make an enormous difference to people’s lives. Early intervention is crucial.
Children with Autism
Over 40% have been bullied at school (1)
Over 50% are not in the kind of school their parents believe would best support them (2)
66% of parents said their choice of school was limited by a lack of appropriate provision in their local area (3)
55% of parents said they had no choice over whether their child attended a mainstream or special school (4). Least likely to feel they had a choice were; families from black or minority ethnic backgrounds and parents who describe their children as ‘more able’ or as having Asperger’s syndrome (5)
Only 30% of parents of children in mainstream schools are satisfied with the level of understanding of autism across the school (6)
One in five has been excluded from school, many more than once (7)
There are more appeals to the SEN and Disability Tribunal in England about autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case (8)
Adults with Autism
At least one in three are experiencing severe mental health difficulties due to a lack of support (9)
Only 15% are in full-time paid employment (10)
51% have spent time with neither a job, nor access to benefits, 10% of those having been in this position for a decade or more (11)
61% of those out of work say they want to work (12)
79% of those on Incapacity Benefit say they want to work (13)
These figures demonstrate a huge waste of human and financial resources and need to be remedied immediately.
The National Audit Office published the findings of research they conducted on public spending on autism. They found alarming gaps in training, planning and provision that not only dramatically reduce quality of life for adults with autism but also waste public money through their inefficiency (14).
The way forward
- Put the child’s needs first. Budgets are limited but LA professionals should not be under pressure to spend less, they should be neutral and objective, putting the child’s needs ahead of short-sighted cost-cutting measures.
- Listen to parents. Acknowledge it is is difficult to raise a child with special needs. Parents can be demanding but they know their child and the child should always be the first priority.
- Provide more staff training and raise awareness about special needs in schools – to help identify children with additional needs, to provide the necessary support to meet those needs and to support parents.
- Enforce an anti-bullying/no prejudice environment in schools, one that is cognisant of special needs, autism, Asperger’s.
- More resources/funding. Almost one in five (18.8%) of children across all schools in England were considered to have some type of special educational need in 2012/13 (15). Thus, every classroom has at least five children with special needs. The facts and statistics quoted above provide overwhelming evidence that early evidence saves money later.
- Make better use of existing resources. Ensure resources are used more efficiently. Consult families and professionals about current services and their priorities for improvement.
1 – 8) Batten, A et al (2006) Autism and Education: the reality for families today. London: The NAS
9) Rosenblatt, M op cit P3
10-13) Redman, S et al (2009) Don’t write me off: make the system fair for people with autism. London. The NAS
14) Clark et al (2009). Supporting people with autism through adulthood. The National Audit Office
15)Department of Education (DfE) January 2013). Special Educational Needs in England.