Emma is the mother of Beth, a bright, sociable fourteen-year-old who has a condition known as- Pathological Demand Avoidance Syndrome or PDA - which is recognised as being on the high functioning Autistic Spectrum.
Until last year, Beth had been attending a mainstream Secondary school in Warwickshire local to the family but when she began experiencing extremely high levels of anxiety, the school broke the news to Beth's parents that they weren't able to provide for her needs any longer. Mum Emma, picks up the story…
Coping with High School
"Although moving to High School in Year 7 was an anxious time for Beth, we felt that she did settle in, but as time progressed her condition meant that she found it increasingly difficult to cope with the changes. Any child with Autism needs routine but it became too difficult for Beth to deal with even relatively 'small' changes such as switching classroom or teacher for a lesson and in the end she was spending more time out of the class than in it.
Increase in Anxiety
When a trusted self-employed support worker left and the school weren't immediately able to provide any one-to-one assistance for Beth, things took a turn for the worse. This, exacerbated by complications in procuring a full Statement for Beth in order to fund extra help,contributed to Beth's already volatile state. Beth's levels of anxiety were so great that any time she spent in school was taken up with trying to manage her reactions rather than her education - to the detriment of both the school and Beth. Eventually, an emergency review meeting was called with Warwickshire County Council and in January 2014 we were told that a decision had been reachedthat the school couldn't meet Beth's needs and she wouldn't be able to take her GCSE's with them. We would have to look for an alternative provider.
A New School for Beth
The onus was then on Warwickshire to come up with options where Beth could attend school and in the meantime she was to remain at home. After looking at most of the schools in the area, only two were seriously considered - one for bullied children which all parties agreed was not at all appropriate for Beth - and the other for mentally and physically disabled children, who also returned the opinion that they were not the right place either. In the end in the absence of any other suggestions, we, as parents, searched the length and breadth of the country to find any school which had experience in teenage girls with PDA and which could provide Beth with the right kind of care, educational provisionand social peer group. We eventually found a good option; Limpsfield Grange.
This school specialises in offering places to young people fitting Beth's social and emotional profile. The problem, however was that it was in Surrey at the other end of the country! This started a whole new roller-coaster in trying to work out how a child living in Warwickshire was able to attend a school in Surrey. Having an established home and four other children to consider, moving is currently not an option and so we started the process of inter-county talks to find out the viability of Warwickshire funding a place for Beth in Surrey as a boarder.
For this to happen Surrey County Council had to agree to provide a place for Beth, which they will do as long as the school are happy she will settle after a formal assessment and then a three month trial dependent on a positive trend in Beth's progress. The situation at the moment is that Warwickshire and Surrey are working together and there is finally an agreement in place to try some 'taster' sessions with Beth. Easy as this sounds, we now start the enormous uphill struggle for our family to help Beth understand that attending Limpsfield Grange will be the best educational option for her future whilst at the same time we are all reeling from the shock of potentially having our 14-year-old daughter leave the family home to attend school hundreds of miles away. Beth has already had to cope with so much and to manage this move will be no mean feat.
At the moment we have mixed feelings. Whilst we are relieved to have found a positive school option for Beth, we are frustrated and angry at the sheer amount of time and energy it has taken to find any school near to where we live which has the skills to deal with Beth's type of autism - as well as the practical issues associated with Beth not having received regular education for the past few months and no formal schooling at all since December 2013. I feel that if we hadn't chased for answers at every stage and done the research on finding an appropriate school ourselves, I don't know what would have happened. We're all just trying to keep positive and look forward to Limpsfield Grange accepting Beth long term and to Warwickshire organising her relocation. It's so important to get the right school for your child, whoever they are and I'm hoping and praying that this will be the right move for us all and that Beth will be happy".
I am much worried about my son who is autistic is presently in Primary 1 MAINSTREAM school, Barnet couldn't get him to get a place in any of the specialised provisions schools 3 years in a roll and I feel it is time to find a private school for him. Even in the mainstream school he couldn't get a place in the autistic (project) class, he has been hanging in a corner of a mainstream class for 3 years, he isn't part of the class as he isn't participating in any of the class activities neither mix, he definitely not getting the required support. Despite all complaints to the school and even to the Council Educational board nothing has changed, it is getting near another end/start of academic year, they still keep promising just as done in the last consecutive years, I need to make a move to help my son and us as it is becoming more difficult as he is growing older. We live in Colindale/Hendon area. Does anyone knows and can help with private independent Special Needs school? We need to send him next year to an appropriate school that can help.I need your help, please. Kind regards Francis.
Frankie - 25-Jan-20 @ 1:35 PM
I am too much worried about my son he has autism and I try to find a private school for him I am living in Ilford If in my area or in London any private independent Special Needs school plz tell me the name I want to send him next year I need your help, please.
Fareha - 22-Jan-20 @ 12:01 PM
Is there any parents with ADHD children going to private schools?
Marguest - 21-Mar-19 @ 8:04 PM
An all too familiar story...our high functioning 10yr old daughter has ASD, SPD & SEN but without the tools to manage her extreme anxiety, she has been unable to attend Junior school for 6 months. We have a team of specialists on board but they simply don’t have the resources to assist as much as required. We are terrified that an EHCP application will be inadequate, thus refused for 1-2-1, the only way she can return to school but as a non-attender, how to prove this? With or without this, most specialist schools with an hour’s drive from us are moderate - severe learning difficulties. It’s been a terribly challenging journey for us all & the fight ain’t over...please help us?
Parley - 29-Apr-18 @ 10:04 AM
I want to thank you for sharing your story. My Daughter is 12 as High functioning autism, currently in a state school, we live in London. Can you tell me how your Daughter is getting on at Limpsfield Grange school please. Im considering moving there if I can get a place for my Daughter. Please tell me how your Daughter is doing. I hope your Daughter is blossoming and happy.
Many many thanks and kind regards
Xena - 4-May-17 @ 12:22 AM
Sandy - Your Question:
I was looking for a private school for my daughter simrandeep who has autism. As her condition is not servere since she has been attending a specalist school I feel she has not made progress and has picked up and copied other children's behaviours and copying them. Which private schools in coventry are most popular ones could you please let me know.
Please see Find a School link here. I hope this helps.
GetTheRightSchool - 4-May-16 @ 2:25 PM
Sandy - Your Question:
My daughter simrandeep has autism and overall learning development difficulties. And toileting difficulties. She is 8 years old attends a specalist school oakwood school in warickshire. She has been at this school for 5 years now and I think as her mother she has not made progress here and feel that she has just got alot worse since attending here her behaviour is worse learning she has not picked up toileting she has made no progress with I feel she has just had her time wasted at this school and as a mother I have falied her this has really got me down and I feel isolated.
I am sorry that you feel isolated and helpless in a situation you feel is impossible to resolve. I can only suggest you speak to the school directly to see if you have any options. If you are feeling isolated you could also enquire if there are any local support groups for families with special needs children such as Special Kids in the UK, here or Family Lives here . I hope this helps.
GetTheRightSchool - 4-May-16 @ 2:22 PM
I was looking for a private school for my daughter simrandeep who has autism. As her condition is not servere since she has been attending a specalist school i feel she has not made progress and has picked up and copied other children's behaviours and copying them. Which private schools in coventry are most popular ones could you please let me know.
Sandy - 3-May-16 @ 9:54 PM
My daughter simrandeep has autism and overall learning development difficulties. And toileting difficulties. She is 8 years old attends a specalist school oakwood school in warickshire. She has been at this school for 5 years now and i think as her mother she has not made progress here and feel that she has just got alot worse since attending here her behaviour is worse learning she has not picked up toileting she has made no progress with i feel she has just had her time wasted at this school and as a mother i have falied her this has really got me down and i feel isolated.
Sandy - 3-May-16 @ 9:31 PM
I can see myself in this situation very soon. My 5year old son is in a mainstream school and has a EHCP plan in place, he has autism which is classed at the moment as severe. The school is good and they have a very good one to one for him but I do not feel he has progressed enough and they are not being completely honest with me about when he hurts himself or others. I have literally had my daughter, other son and my nephew all tell me about separate inncodents they have witnessed as school. Nothing has been said to me about it at pick up. The thing is I know under all these negative behaviours he presents with he is actually really intelligent but I don't think he learns in the same way to other children and don't think mainstream is right for him. However the school he is at now are doing everything to hold onto his funding and I know that they will not agree to him going to a special school. I am considering home schooling him for a while and then seeing how we get on. I also have another son who is Aspergers and he is very advanced and the school do not push him enough to achieve a lot higher. No other mainstream school seems to wants my youngest with severe autism because of his needs and I have had one local school openly reject him based on his disability which is basically against the law. Its all such a headache. There is an excellent autistic school about 15 miles away but they have no places and I would love for him to go there.
katie - 29-Apr-16 @ 10:04 AM
Thomas, keep fighting...we have been in the same situation with Essex as you. My 8 yo son has been out of school for a year now, failed mainstream and LA special provision. Just been approved for independent school, but nothing available locally. My dear little boy has no other option but to board. Heartbreaking situation, but my son deserves the right education.
kate - 1-Feb-16 @ 2:45 PM
My 8 year old daughter has autism and was in a mainstream school in Essex- Herringham primary. However the school was unable to provide provision for her and ended up isolating her from other children because they said she was lashing out at other childrenand staff and they would keep her in a small room the entire day without letting her play outside during break time. In addition the school started excluding her every time there was an incident at school. Eventually I decided to pull her out of the school coz of the horrible way the school was treating my daughter. I'm now battling with SEN dept in the coucil for them to find a school placement in a specialist school but it's now been 3 months and my daughter is still at home and out of school. SEN keep saying there are no school spaces in the specialist schools they've approached. Heedless to say it's been very frustrating and wedon't know where else to turn
Thomas - 21-Jan-16 @ 12:34 AM
@Chris - when all else fails contact your local MP, or newspaper who I'm sure will be interested in the story. Your son has a right to an education!
Tess - 9-Dec-15 @ 3:14 PM
HI My five year old grandson has adhd and autism and has been excluded from mainstream school as they cannot deal with him. My daughter and her husband have another child 2, who does not have autism.
Daughter is at her wits end as the SEN team, the SENDIAAS team, autism outreach and the school cannot find a place for him. They say they have done all they can for him. Ridiculous, he is entitled to an education. She is trying to educate him at home with work from school. He has not been in school since Easter.
She doesn't know where to turn. Can anyone advise where she is to go now?
chris - 9-Dec-15 @ 10:36 AM
@Elzy - I can only suggest you speak to your school directly as it should have all the measures in place in order to ensure your daughter does get the help she needs. I have also included a link to the National Autism Society here which suggests approaching the Education Rights Service which may also be of use.
GetTheRightSchool - 20-May-15 @ 2:36 PM
Hi I was in similar situations as you my son is 14 and we took a serious down hill slide when entering Yr7 and we now have the diagnosis of PDA. My sons anxiety was so high like your daughters that any small change rooms teachers meant he could not cope. His school were understanding and although for over a year he hardly attended normal class and if I did get him to school he spent it in a special needs room we have now turned the corner with special measures that the school has put into place to help reduce his anxiety, he is now in school 70% attending all core subjects. All school support and children are different but happy to share what has worked for us in a supportive mainstream School ?
Emma - 17-May-15 @ 3:46 PM
Hi we are in a similar situation . My daughter also has high functioning autism . She has a great deal of difficulties including high anxiety. We left one school due to bullying . Which led to extreme I'll health where she couldn't go to school. We have then changed school and whilst she dosent go very much in to the classroom . She stays in the special needs room even that she struggles with high anxiety and any pressure. Know they want her to go full time and she has now detoriated health wise due to this thought. And has said she can never go back. I wonder if mainstream is not suitable for Her? Any help or advise is welcome ?