PLEASE - Son diagnosed autistic 14 now struggling re statement

Hi

I have just read a fab book called Home Educating Our Autistic Spectrum Children.Wish I had read it ages ago as I would have home schooled my 16 year old "Aspie" as he likes to call himself!!!

Hope this helps!

Hi Moonraker... I will take your advice and folow it up tomorrow, I have no idea if those facilities are available but should know within the next few days 

I'll keep you updated... 

Please keep the advice coming and a huge thanks xxx

HI Again KaloJaro... love the profile name BTW 

You are very percveptive to have picked up on my sons mental health and offering suggestions about CAMHs. I think it is an absolute critical area for parents family or carers of ASD children to be alerted and informed about - it really is something we might not acknowledge, realise or want to accept. Labelling a child as depressed is really not what we do, it is really difficult for our culture to accept this even exists win adults let alone our children... thank you!

Thankfully may son was referred by the school nurse and was seen quite quickly by our local CAHMs team. I have to say she sounds like your "one" teacher who noticed... she was & is a breath of fresh air & couldn't believe he had not come to her attention in the 3 years he'd already been at the school! She wasn't aware he existed, didn't realise how sad he'd been presenting to the support unit etc etc. it was I who called her after being adviced to do so and she sought out my son and called me back within 24 hours. She had lots of details about my boy, she chatted to me for over 30 minutes and was the first person i'd spoken to at school who'd ever discussed my son from a caring viewpoint. Up until this, although I hadn't realised,  the emphasis had always been on attendence, attendence attendence. She promised to call back soon with a progress report and did so 2 days later. She informed me that she had wanted to sit back and assess everything she had picked up about my son from the various departments in school and take her time to reflect, also seeking the imput of her professional colleagues in her team. She adviced me she had done a risk assessment and my son was in the catergory of being a young male at risk of suicide. She was extremely helpful, didn't frighten me she explained this in context as this is a group at highest risk in our country etc... She explained that she felt he may be depressed, very low moral etc etc and that he would benefit from seeing somebody specialist. She was true to her word and pushed my son through to CAMHs as quick as I think she could. We attended the first meeting a few weeks ago but sadly he has refused the last 2 meetings. I have remained in touch and she has agreed to visit us instead. My son has always been reluctant to socialise so meetings of this nature have always been a no no... now I know he has ASD I am beginning to understand why. I will make sure CAMHs stay engaged and ensure my son get's their full support. I Will also discuss the statementing process with them too, I had no idea they had any involvement??? 

Thank you so much you are such a valuable asset to us...

Happy - My son has Sensory Processing problems alongside his ASD and was referred to an ASD specific Occupational Therapist by his paediatrician. We waited a long time for the appointment to come through but she has been my son's biggest ally with the school. Happy, I would contact the paediatrician involved with your sons diagnosis and ask if she can refer you to such an OT (if one exists in your area). They can advise the school about his learning environment and help your son with coping strategies with the sensory issues impacting on his life, they can also tap into other 'health' resources such as Audiology. It certainly is worth a try.

Hi again,

If your son is depressed, or showing signs of not improving from a depressive state, you could try what my mum did and refer him to CAHMs via your local GP.

I was only diagnosed because one teacher noticed how much I was struggling with OCD tendancies and recommended (discreetly and with the promise I wouldn't tell the other teachers he said so, as though afraid he'd lose his job) I get tested for OCD.

The GP was surprisingly good, she acknowledged how upset I was getting simply describing my problems and referred me to CAHMs right away for assessment. I'll admit, CAHM's took a lot of months to organise a meeting to 'test' me for autism (the psychologist in the very first meeting recognised the similarities between my symptoms and another young aspie patient of hers), but within weeks, I had a formal statement and diagnosis as well as continued support until about a month ago to help me adjust with my diagnosis as well as how to cope in school and in daily life.

CAHMs are also a lot more informed with the whole legal procedures about what schools can, can't, should and could do for you personally, and can even arrange meetings with the school to discuss how they can adapt to help you.

Best of luck.

Well said stranger! 

They chose the wrong Mum to bully. I don't do dramatics or indirectness, I just speak clearly, factually and honestly. I will get there, of this I am sure. 

Like your head, a Deputy Head at my sons school said "we have many children here with Aspergers and they do just fine and their attendence is high, so there is no reason why your son should be any different to them"

Oh for christs sake. Austim is a spectrum disorder. Not everyone has the same needs. That includes 2 people with a diagnosis of Aspergers. I would be tempted to point that out to her.

They're medically trained now, are they? I was once told that I don't have Aspergers. No I don't. What I have is Autistic traits.

I would also remind the school that your son is classed as disabled under the Equalities Act 2010 and the school are required to make reasonable adjustments.

Wow KaloJaro, thank you. What a brave, articulate and intelligent young lady you are.

Hearing from another person who suffered like my son is now has been so informative. He rarely talks to me about these things and if he does he cannot keep on track for too long... Autism hey? And exactly like you, my son is depressed, frustrated and tormented at school. He literally hates attending but does with great heaps of encouragement. He is totally out of his depth, is continually underachieving and is repeatedly given negative feedback for being lazy and unwilling to try. I don't believe he is these things and I am now certain he actually has sensory overload and cannot function in the environment. Too many noises, people, smells, unbelievable amounts of information to process and ultimately never moving any steps forward... What a nightmare.

Like your head, a Deputy Head at my sons school said "we have many children here with Aspergers and they do just fine and their attendence is high, so there is no reason why your son should be any different to them"

The SENCO has emailed me saying that statementing is for very complex needs and school should be able to meet most SEN childrens needs within main budget. That they wouldn't support a referral unless the child had complex needs. I found this very indirect! 

Clearly they are unable to meet my sons needs, he is 14 now and has continually underachieved due to innappropriate/none provision. I am not even confident they have the capability to conduct an appropriate assessment of my son's special educational needs, otherwise wouldn't they have done that already? He joined the school with an IEP from primary as he is dyspraxic, he doesn't even have an IEP now, there are no plans in palce etc and when I asked to meet and discuss this, and after 3 weeks of waiting for a reply I eventually got a phone call telling me he didn't need an IEP, he was lazy, manipulative and stubborn. That there was no way he showed any signs of aspergers or autism, asking who on earth has told you that? (this was prior to diagnosis).  

Sooooooo KaloJaro I will not stop pushing, I assure you... thanks 

Hi Happy,

I was diagnosed with Aspergers Syndrome aged 17, just as I began the final year of 6th form.

My school were no help until I was diagnosed, and even afterwards, outside of the SEN department only two or three teachers adjusted their teaching patterns or took the time out to help me with the areas I struggled with. There was a prevailing sense of 'shes managed all these years, so why change?'

And this is from a school with an Autistic specialist unit.

Don't let them stop you getting a statement for your son, with a statement, they'll be legally obliged to help him, without, they will only help him out when they feel charitable i.e. rarely to never, unless they have an Ofsted inspection.

Teachers ignorance, and even teaching assistants ignorance, is shocking. When I first told my headteacher I may have Aspergers (I wanted to know the options available for me) he told me 'I doubt it, and it can't be that bad'.......yeah, because being overlooked and overworked for six years and suffering from depression 'wasn't that bad'. So don't take their word for it! Keep pushing!

Btw, you can order yourself a free hard copy of 'Special Educational Needs: Code of Practice' here: https://www.education.gov.uk/publications/standard/publicationDetail/Page1/DfES%200581%202001

Hi Sharon

I have just located and sent off an enquiry to the parent partnership in my county. The website was informative already and it was a great tip - I have asked them to send me the best contact in my area.

Ta ta ta 

Other places to look (sorry, I know this can turn into information overload!)

http://www.ipsea.org.uk/ Independent Parental Special Education Advice, I haven't spoken to them, but I have used their 'Refusal to assess pack' from their website

http://www.sossen.org.uk SOS!SEN independent helpline for special educational needs. They are based in SE England, but anybody can call their helpline. We have used their helpline as well as one of their walk in advice centres and they have been fantastic.

http://specialneedsjungle.com/welcome-to-the-special-needs-jungle/ A website set up by a parent who has been through statementing process. She has also written a book which I've just bought - has an example of a statement application in which could be useful.

Please keep advice coming - I am actioning many of the tips already!!! 

I will update you all accordingly. 

Happy :) 

Hi Happy

Reading your original post I could have been reading mine and my son's situation almost a year ago, our boys are even the same age and diagnosed at the same age.

Your son does need a statement and he now has a diagnosis and needs support to ensure he has the education he deserves. I found out on Monday that we have been successful in the Scottish equivalent of a Statement and already things have changed for my son for the better as support has been put in place for him along with a reduced timetable and less subjects as that is all he can cope with at the moment. I have battled almost a year to get it but it was worth every tear I shed along the way!

Don't be fobbed off by the school, ignore mention of budgets they are no concern to you, also your son can stay at school until he's 19 so don't worry about 'only having 2 years of formal education left'.

I think the first thing you should do is contact the Education Rights Service here at NAS, the link is below:

www.autism.org.uk/.../advocacy-for-education-service-in-england-and-wales.aspx

It would also be worth you contacting the Parent Partnership, they are impartial from the LEA and are there to support parents who have children with SEN. Again there link is below:

www.parentpartnership.org.uk/

Stay strong and I wish you and your son the best of luck.

Hi Happy

I have a 12yr old son who has just been diagnosed with ASD. He's Yr 7 and I haven't managed to get him settled into secondary school - we did Sept - Oct half term at one school and then he wouldn't go again, tried another school Jan - Feb half term and he hasn't been back since. It has been this school crisis that led us down the diagnosis route.

We are now heading down the statementing route.

Being new to all this I can't really advise you on what you should do. But I think it's quite possible that the school are not going to be able to meet your son's needs without a statement. 

My experience of the statementing journey so far is that it's a very bumpy ride. The process takes at least 26 weeks. After 6 weeks they tell you whether they are going to go ahead and assess. We're currently at the stage where they have responded with a refusal to assess .... so then you have to move on to the appeal ....

Are you aware that if the school won't request a statutory assessment, then you can write to the LEA to request one? Ideally you want the school on side though - and it sounds like they're not acknowledging your son's difficulties at the moment unfortunately. 

Is your son on School Action or School Action Plus? If he's not on School Action Plus then the LEA may turn you down because the school has not tried everything. Although you shouldn't let this put you off.

There are websites/helplines out there that can help you with the statementing process. I'll try to reply again later with more details (if someone else doesn't jump in with the info in the mean time)

Sharon

I don't know if what I'm about to say is relevant:

Some people (including me, partly due to ASD and partly due to other disabilities) require exam concessions. If your son is statemented and requires these concessions, it means you don't need to supply a doctors' letter stating his difficulties. 

A statement also means that the school have to meet the recommendations. They can't just decide "we can't be bothered to do that".

I was never statemented and required a lot of help in college. Because I wasn't statemented, they decided that my disabilities can't be that bad (I was on the partially sighted register. This was pre-ASD diagnosis for me) and that they will decide what help I need and ignore what the consultant says. They didn't meet my needs at all.

Thank you so much for taking time to reply to me Suki! Your comments are the most positive and practical words I have heard since my son was diagnosed in May. I thank you sincerely. 

I hadn't heard about home schooling until reading posts on here that referred to it. I am now off to research it further and hope I can find links in my local area to help and guide.

I am in a very fortunate position as I took early retirement a couple of years back so I have plenty of time on my hands............ I feel a real energy about this possibility and if anybody can make this work then me and my boy can...

If anybody has any specific homeschooling links that they believe are useful I would be more than happy to hear from you. 

Suki..... your words are extremely powerful, thank you. I will keep you updated!

Now this is what i call a community!!!

I feel empowered & Happy & Positive x

Hi,

Do you know what?  I think school is part of the problem.  Our kids find the school environment particularly difficult because of their many hypersensitivities.  When your child refuses to go to school, there is a good reason.  We all hate to go into environments which cause us discomfort, and for our special children there are many such environments, and school is a major one.

I've met so many parents who have moved their children from school to school in search of the right environment, without success.  You said yourself that your child is intelligent and capable, and I'm sure you're right.  However, if his energies are focused on surviving, he will have little brain focus left for learning, hence his underperformance.

Sadly, so many schools do not understand this, and even with a statement and the support of a TA, unless he is lucky enough to have one of the super special sensitive ones that do exist, nothing significant is likely to change for him.

If you want things to change, you have to do something different.  Of course, your choices will depend entirely on your personal circumstances.  I would recommend exploring your local home education community.  An on-line search should yield some contact details.  There are plenty of kids in this country who are not in school, and receive a very satisfactory education outside the system, based in an environment where they are loved and accepted, and who can make friendships and have social contacts at a level they are comfortable with outside the home.  Being in society does not make you sociable - a fact which too few educationalists seem to realise.

I do wish you all the best.  Remember, you know your child and his needs better than anyone, except him.  I would encourage you to make a positive choice for his future, rather than just accepting what is offered.