For the first time since my sons started at their special school, this term we have had no fees to pay as they are both now being funded by the local LEA. I've written in post passim about finding our way through the special needs "jungle" of statementing and I hope if you are in that position now you will find some of the things on this site useful.
Indeed, I am only too aware of how many people are going through the process and are having a much tougher time of it than we did. We applied at a time when our LEA was reassessing the way it looks at Statutory Assessment, Statementing and Funding. For children with high-functioning AS, like our boys, it recognised that it had little suitable provision and that these children, who may have so much potential, so often fall through the cracks. They may end up in the benefits or mental health care system when they become adults because they have not received the social education they needed and cannot put to use any academic education they gained into a worthwhile career. Or any career.
If they are lucky, they may have had supportive parents and may have been able to progress to university and into a job in a narrow-focused industry (sciences, accounting, research) where their ability to do the job is more highly prized than the ability to make lively and reciprocal conversation. These are likely to be the young people from the very highest and most able end of the spectrum, who are from middle class backgrounds with university educated parents themselves.
But too many AS young people will be in low-paid jobs far below their intellect because they cannot cope with the social interaction needed to progress up the career ladder and they have not had access to or found a route through to the support they need to thrive. Others may find their ASD so disabling that they will have to live in sheltered accommodation, relying on Disability Living Allowance and other benefits.
Now, it is not true to say that if you don't reach the top of a well-paid profession you won't be happy. For many people with AS, happiness comes just from having a friend to talk to or being able successfully to cope with everyday living. Many people with AS get married and have families of their own and are perfectly happy within their own circle, thank you very much.
But just think how different it could be if everyone who was diagnosed with Asperger's Syndrome got the help they needed at an early enough age for it to make a significant difference to the outcome of their life. Yes, some may still need to live in sheltered housing and will work in in low-stress jobs because their condition dictates it. But for others it could mean the difference between a life of just coping and a life of thriving. Every single person with AS should have access to the right kind of education that my boys are lucky enough to be getting.
Parents who are worried that there my be something socially 'different' about their child should not just bury their heads in the sand and hope they will 'grow out of it'. They should not just shrug and say their child is 'coping' at school when you really know they are just keeping their heads above water. Your kids have one shot at education and one shot at a successful and happy life and it is the duty of their parents to ensure they have the best opportunity of achieving that. Even if the option of a specialist school is not open, you can speak to your school's SENCo, make your concerns known, ensure they are getting appropriate support at school and do your own research as well. Parents' instincts are not often wrong.
I am speaking here from experience. We were once in the position of knowing something was different about both of our boys but not what to do about it. I spoke to their teachers, I researched their symptoms, I got them referred to a paediatrician. We got a diagnosis. We were told we'd never get a statement for either boy as they were too able so not to bother trying. We were told they had to be three years behind to get a Statutory Assessment. We were told all sorts of inaccurate things by teachers who didn't know any more about Statementing than we did.
We didn't listen and now we have two statements for both our sons who are both in the top few percent for ability. More than that, our LEA is paying for them to go to the school of our choice where they can be supported. It can be done. Your battle may be harder than mine; you may have to go to Tribunal. You may live in one of those LEAs like Hampshire that think brinkmanship is the order of the day. These councils will oppose you to the very last second in the hope that you will be scared off or you will end up broke, broken or both. They don't care as long as they don't have to shell out for your child. Shame on them, but do not be deterred. Even when you are tired and stressed and thinking of giving up, remember who you are doing this for and that they deserve the best you can give them.
If you need advice you can always leave a comment here and I will try to help or point you to someone who can. And things are changing. There are politicians out there who know about special needs, and parliamentary candidates such as Maria Hutchings who are fighting every day to improve the situation for young people with ASD. We just need to get the ones who are actually in the government to make sure that reviews that are currently being undertaken are acted upon so that the next generation of young people on the spectrum don't face the same uphill struggle as ours do.
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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Can you help me I left UK in 2004 and want to come back before I left the LEA had issued a final statement for my son and they were willing to fund a home based Son Rise Program contributing 13000 per annum, just 6 months after the funding commenced my then husband due to health reason had to sell his business and we moved to Spain and have never got any help or support here. My son was once severely autistic but I have done such a great job with him he now does not belong in a special needs school but will not cope in mainstream either. I would appreciate some guidance I have seen an independent school that I genuniunely believe would be best for Tobias they have Occupational therapists and Speech and Language therapists that sepcial in pragmatics mand understanding Sensory Processing Disorder as well, the thought of the statementing process makes me ill, I can still remember it, all the delay tactics they employed they even told the lady in Parents in Partnership she was spending too much time helping me and had to stop. I still have copies of all the papers but where do I start, what do I do because i have not been resident in the UK for the last 5 years, there are just no schools here for him, yes you have the sun, but now we are divorced I have no friends no support and no family here the private english schools will not take him and he will not in a million years cope in Spanish school. Please if you can get back to me i would appreciate it and congratulations for your achievement I dream the same for my son, my son is just like your sons, they really don’t have state provision for these kids, my son wants to have kids, be a VET travel he deserves to have dreams and for them to come true, I have done wonders for him but am burned out and it would do wonders for him to go to school and achieve all he dreams. many thanks
Zobeeda, as I understand your issue, you are not yet resident in the UK. I am not entirely sure, but I think you need to be living in this country first. Then, although your statement is 5 years old, you still have it and it should still stand unless your son’s needs are significantly different. If you think it is no longer suitable, then once you are back in this country, you should apply for a reassessment of your son’s needs to your local council.
Although you say your son is much improved, he clearly still has difficulties or you would not say he could not cope in mainstream so some form of specialist education is necessary. Although the statementing process is highly stressful, you must hold on to two things, 1. you are doing it for your son & 2. you do not have to do it alone. There are excellent sources of support for parents such as the National Autistic Society’s Advocacy programme http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=143, IPSEA, http://ipsea.org.uk/ and SOS!SEN: http://sossen.org.uk/who_we_are.php. Any of these organisations will be able to assist you with advice and practical help. You could also approach this school that you have found to see if they think your son is suitable for admission. For example, if you have a trial day at our school, they give you a mini assessment to let you know if they can place your son.
You could also consider, if you have the resources, getting an independent educational psychology report. I have found that LEA Ed Psychs and Special Needs Panels do pay attention to them but they can be costly.
Well done for working so hard with your son. Children like ours need dedicated parents to ensure they get access to the right resources and education. If you come to the UK, you may need to place him in mainstream to begin with – don’t forget you do have a statement already. If you can afford the fees for the independent school you like, you could then seek to place him there while you work on his statement to try to get funding. This is what we did and the school were very supportive during the assessment process. I hope this has been helpful in some way. Good luck and let me know how you get on!
Hi
Any advise on help in a school sixth form, statment continues but any one had any experiences they could share on type of experience etc