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Autism fight for help

(53 Posts)
Crafting Mon 28-Mar-16 20:28:17

To anyone who has a newly diagnosed GC on the autistic spectrum a brief word of advice. Encourage the parents to fight as hard as they can for all the help they can get. It won't be offered, it will be a hard difficult time. You may have to fight prejudice, the education authority and possibly the school but do all you can to get as much help as possible as soon as possible. We have just had our first glimmer of hope in a long while and it is worth the battle to see a smile.

Regalo Mon 28-Mar-16 20:36:39

Autism can be so difficult. Many children on the autistic spectrum appear to cope at school but erupt when they get home. It can therefore be very difficult to get school support as the school are not seeing or dealing with difficulties. Parents need a lot of strength and determination to fights lot of battles safely.

glassortwo Mon 28-Mar-16 20:36:47

crafting my sister has had to fight every step of the way with her 22yr old son, dont give ever give up.

Regalo Mon 28-Mar-16 20:37:50

Sorry a last word previously should have been safely not safely!

Regalo Mon 28-Mar-16 20:39:17

Typo again...sadly not safely!!

Luckygirl Mon 28-Mar-16 20:46:40

It is a fight. Gird up your loins!

rosesarered Mon 28-Mar-16 22:26:08

It certainly is! Which was an eye opener to us some years ago when DGS was diagnosed aged three years. You suppose that it will be difficult ( life with them) but have no idea how hard getting the right education for them is.Which is why so many end up being home educated ( a better option than the wrong school.)Our DD has had a constant fight to get a good education for him ( paid off though thankfully.)

LullyDully Tue 29-Mar-16 07:33:44

In my experience only parents who fight get what they want for a child with special needs. I have a friend with a youngster with cp and she has to fight every step of the way .

P.S. we already have a thread on autism The A word which may be useful.

trendygran Tue 29-Mar-16 17:33:01

Unfortunately it is a fight. That should not be the case but sadly it is. I know several parents of Autistic children/adults and they all have a fight on their hands whatever age their son or daughter is. Not a good situation.

hildajenniJ Tue 29-Mar-16 19:33:35

I have two DGS's on the autistic spectrum. They are 7 and 5. They went to school in a village in Scotland. The elder boy only got one hour a day extra help! The younger one has not had a diagnosis yet, so he didn't qualify for extra teaching. Although the little one found playground dynamics puzzling no-one was there to guide him. He was sidelined and made fun of. It distressed him to have to go out and play but he was not allowed to stay inside. My DD got so fed up of having to go up to school, usually on a daily basis, sometimes two or three times a day to help calm down distressed and anxious little boys, that she has removed them from school and is home educating the whole family, including their 9 yr. old sister.

Crafting Tue 29-Mar-16 19:50:16

Sorry your GC had such a hard time hilda. It's so sad to think of the suffering children go through if they are vulnerable for any reason.

I home the home education works. At least being three of them they will have each other for company. I wish them all well.

Penstemmon Tue 29-Mar-16 20:07:46

I am always sad to read that children with additional needs are so poprly supported. Autism in its many manifestations is not new. All schools should know how to help with simple things like playtimes etc. if that is a particular issue. Unfortunately it is slow for funding to arrive in schools, tough to find the right staff to support ( we are advertising for 3rd time for support for child with ASD) so even if a school is fully understanding of the needs it takes too long to get support in place. I have to say this is not going to get better with cont. drive for "improved data" demanded of schools. Some will be reluctant to take kids with SEND. angrysad

Crafting Tue 29-Mar-16 20:40:31

Good support can make a real difference. ASD children need help to understand how to get on and socialise with others. This basic requirement will affect them all their lives if they don't get help. Funding again being a main issue.

Jane10 Tue 29-Mar-16 20:47:33

The Autism Toolbox is an excellent resource for schools (and parents) its free as it was produced with Scottish govt funding. If your childs school says they don't know anything about ASD direct them to its website. I've actually always found it much worse when a school says it knows all about autism. Nothing worse than people who don't know what they don't know!

Penstemmon Tue 29-Mar-16 21:03:00

Nobody knows all about autism!! Not even the real experts. There ars some children with ASD who do well in mainstream but for others it is the wrong place. Sadly places at specialist LA units/bases or special schools are insufficient for the demand or are privately run and beyond the budget of many local authorities who then try to avoid placing children in private schools as it busts the budgets. This could be changed by government if there was a will to do so.

trisher Tue 29-Mar-16 21:23:35

There has been a need for parents to fight for their children's special needs for a long time. It is to do with funding, lack of training and understaffing. So schools have a long process to go through when assessing a child, they then need to find suitable support staff and sometimes don't use the staff properly. Making them responsible for groups of children rather than designing a special programme around the child. I went through it with my dyslexic son As a teacher I knew how to behave in the regular meetings, but the level of ignorance and lack of understanding from some staff shocked me. Some staff were excellent but not all. I would say keep records of every meeting you have, ask to see your child's school file regularly, and if there are any comments made you think unacceptable, challenge them. Congratulations on your development Crafting. Well done and all the best for the future, it is a long and hard battle.

Penstemmon Wed 30-Mar-16 07:48:11

As (all) children have differing needs so the support should differ too. Also all kids can and so respond differently in school /home. What concerns a parent at home may not be manifested in school. It is trying to keep the needs of the child central to what is provided and not what is convenient for a school or a parent decides they want as both may not be what is best for the child. We had several children with significant SEND at my school and some were able to make good progress in mainstream school with different support programmes. Others would have benefitted from more specialist educational provision. Sometimes it was lack of funds and places that created the mismatch but sometimes it was parents demanding what they wanted against all evidence.

trisher Wed 30-Mar-16 10:44:32

In that case as the professionals Penstemmon teaching and support staff should work with the parents to help them understand and appreciate the evidence. I frequently found a number of teachers (and I am a teacher) who refused to look at reports and thought they knew best and they could handle difficult behaviour. Even when policies had been discussed and agreed some staff did things that aggravated situations. It would be great if all teachers were fully understanding and appreciative of disability rights and the rights of the child, but they aren't.

Jane10 Wed 30-Mar-16 16:41:55

That's certainly what I've found trisher! Teacher knows best - but doesnt!

maddy47 Wed 30-Mar-16 17:06:30

I think it is a postcode lottery with autism. My two autistic DGSs live in Oxford. The oldest has just (last September) gone up to Senior school. Luckily, not far from DS and DDiL's home is a wonderful school with an autism unit. DGS can leave any lesson when he finds it becomes too stressful and make his way to the unit, and peace. And it is working so well. He is remaining in lessons longer and longer, presumably because he knows there is a 'place of safety', he has less and less need of it.

Other DGS (brothers) has just started junior school, and has a one-to-one helper. I don't think I could want better provision for them both. Oh, and the elder one goes, every Saturday morning, to an Autism Social Group for young teenagers which he enjoys.

Penstemmon Wed 30-Mar-16 17:20:12

I am also aware that there are teachers who do not choose to work on the advice of other professionals / parent knowledge and also of schools who have rejected children because of SEND but equally have worked with hugely talented teachers and LSAs who have made huge differences to children with SEND lives.

I have tried very hard, with more than one family, to help parents a) come to terms with their child's special needs, b) to get parents to appreciate that we were not the right place for their child's particular needs. We had many children with SEND, both in mainstream classes and in our base, and knew well what needs we were able to meet and those we could not. It does no service to a child to be placed in the wrong school because of the intransgience of 'professionals' or parents.

daphnedill Wed 30-Mar-16 17:54:43

The big problem, Penstemmon, is money. Even if a child is statemented, it's becoming increasingly rare for a requirement for 1:1 support to be included in the statement, because of the cost implications.

I never had any training, although I became quite interested in autism for a number of reasons. With the best will in the world, it's almost impossible for a secondary teacher with 30+ pupils in a class to give individual pupils the support they need. I also think that the role of LSA/TA needs re-evaluating, because I sometimes think that providing one ticks a box without providing any benefit.

Every child in every area should have access to a high quality school or unit for autism, but with increasing fragmentisation caused by academies, that's less likely than ever to happen.

Penstemmon Wed 30-Mar-16 18:13:15

It is also a combination of funding and training. Schools are not well funded and the pay rate for LSAs is low and the job is skilled and demanding. A person can get the same pay working in retail with fewer demands. Getting willing staff to access the right training is hard as courses are few and far between.

I think that in some places academisation could certainly have a negative impact on specialist provision for children/students with SEND. The new Education and Health Care Plans (EHCPs), replacing the old statements, are supposed to bring all professionals for a persons's individual needs together to be addressed as a whole. In principle this sounds great but unless matched by the right resources will not be worth the paper they are written on.

Also I have to say daphnedill 1-1 is not necessarily what a pupil needs. Some children will need this, particularly if they have medical/physical/mobility needs but children considering mainstream schools would usually have the ability to cope without specific f/t 1-1 support. Even if they need this level of support to begin with the aim would be to enable to student to work with growing independence and to reduce a velcroed TA/LSA. Also the teacher needs to be working with SEND children as much as non-SEND children to make sue they are getting the best input possible. School systems should be supportive and flexible to help children who find particular situations difficult to manage.

Crafting Wed 30-Mar-16 21:27:11

At my GC last school the head and teachers said they did not know what to do with an autistic child and had no resources to help . When finally they realised how bad things were they did try to help and were supportive but by then it was too late and he damage was done. There is only so much a bullied and excluded child can deal with.

New school (an academy) have been on board from day one and are providing excellent support and help. It makes such a difference to our GC. Place in the school was only achieved by the huge mount of effort and hours his parents put in to get him there. Hence the title of my post. Help can make a difference - fight for it.

daphnedill Thu 31-Mar-16 08:06:07

Penstemmon, I agree absolutely that children in mainstream school shouldn't usually need 1:1 help, apart from specifically targeted lessons. I expect you know that the Labour government funded schools for Maths and Literacy 1:1 support, but this had to be given by qualified teachers NOT LSAs. That funding has now disappeared into the general budget and is no longer ring-fenced.

Your description of the ideal scenario is wonderful, but in my experience not realistic. As a secondary teacher, most of my classes had over 30 pupils and it just wasn't possible to give every child in the class individual attention. If a SEND pupil also happened to have behaviour problems, this severely affected the learning of all pupils.

When I started teaching in 1982, a percentage of SEND pupils were in special schools, but gradually they were closed, probably with the best of intentions. However, nobody really gave any thought to how these pupils would cope in mainstream schools. Funding and training were (and are) inadequate. In thirty years of teaching, I never had any specific special needs training. Teachers were just left to cope as best as they could. Boxes were ticked by employing TAs and LSAs, but in my opinion the pupils with the greatest needs shouldn't be fobbed off with the least qualified staff. TAs in secondary schools aren't the best solution. I also have to say that if I had had a child with certain special needs, I wouldn't have wanted him/her in a mainstream school.

Crafting, as a matter of interest, what kind of help is being given in the new school?