Help/advise needed

Thank to you all for your responses. The GP is absolutely fuming as they have now gone against 3 professional recommendations. He is trying his best to push it his side through a pediatrician but isn't hopefully as CAMHS have already stated what needs to happen. Its since transpired the woman at the school is not SENCO and only fills in the early help. GP has advised me to go private if possible, which I now will do. He thinks the push back is because of funding. At the end of the day its my 7 year olds in the middle of this and he should be priority not down to funding. 

Bless you, you know your son better than anyone and never forget that!

This is a wonderfully encouraging story - thanks for sharing. Like you we came across some people who were really great at helping our son and offering support and help in various ways - and you never forget them! I’m glad things worked out well for your son :) 

Im so sorry you are going through this, I experienced the same with my son's school 20 years ago. They were no use and refused to help my son who also said he wanted to die at the time :(

His paediatrician was fantastic, we found him privately but he worked part time in the NHS. He advised I go for 2nd opinion and said request for him to be seen by the Elizabeth Newson Centre in Nottingham, he knew the centre very well. It was an amazing centre and they clearly saw Aspergers and PDA among other things.Down side is local authorities can dismiss out of area diagnosis back then so it didnt help much but it helped us to help him, which is important! My son recieved therapy via counselling at school as he got older. His paediatrician was worth his weight in gold, he fought for my son and I will be forever grateful to him. My son is now 26, did a degree at Uni and he now teaches PE in a high school, he has done us so proud! 

Good luck and don't give in, they want us to shut up and go away, never! Our children matter!

Take care of you 

I meant to say : ‘won’t feel as able to ignore’ ! 

Just to add to my previous reply - when you write to the school don’t to forget to make it clear that your GP suggested that your son might be autistic - and that he/she recommended that you ask the school to begin the referral process. They might feel able to dismiss your concerns, but they feel as able to ignore the opinion of a qualified GP who’s expert opinion is that your child could possibly be autistic. 

I’m so sorry - what a stressful situation - it’s shocking that the school are refusing to make this referral. When my children were young you could get a referral for an assessment from your GP as well as via the school and education psychology. I have heard of cases now where the school just refuse. Why on earth would they refuse after all?! They have a distressed child who needs help - they should be doing everything they possibly can - not refusing. 
I would say that it’s a good idea to write to people rather than phoning - as it’s helpful to have a record of what is happening. I would write to the headmaster expressing your concerns. If it’s an email copy in your local MP or relevant person at the LA who is responsible for Special Needs. Write to them giving a detailed explanation of the difficulties your child is experiencing - and why you think the referral is necessary . It might be a good idea to mention the specific ‘symptoms’ that your son has that relate closely to signs of Autism - and say that you believe it’s possible that your son is autistic. Then request that they reply to you IN WRITING explaining exactly why they are refusing to refer your son. 
I find that when people are doing something that is not ‘right’ they are very reluctant to put it in writing - because they know it might ‘come back to them’ down the line. Always get things in an email. Sadly in the world of education and Special Needs it’s important to keep detailed records and have evidence of everything - it definitely helps when trying to get people to actually do their jobs properly. Sad but true. 
The system is wrong - because schools should be schools - not healthcare - it’s ridiculous that the only was to get a child diagnosed with autism is to go through the school. Autism in not a ‘school problem’ - it’s a 24hr 365 days a year neurological condition that lasts into adulthood - it’s not something that just manifests in school! We don’t get schools to handle the diagnosis of asthma or arthritis - why on earth are they expected to be a judge the presence  of a neurological condition? And to be the sole source of referrals for it?! It’s crazy. I’m so sorry that you and your child are having the suffer because of this ridiculous situation. 
Email them - provide your evidence, and directly ask them for a written explanation of why they are refusing to refer your son. Then you’ll have something to work on - and in addition you’ll have more information about why they hold that position. It might be that they will just refer him right away - because they’ll realise that you’re not going to be just fobbed off, that you mean business, and that you’re organised. My instinct is that if you do this - they will refer him. Good luck!

Hey Kathyrn89, it really sounds awful what your family is going through.

In all honesty, is it possible to change schools? I don't understand why some schools seem to refuse help to kids that need it. Some people are stuck in their ways and seem to look more to blame the parent then help the child. I also don't understand why CAMHS discharged without the pathway in place? My son's pathway went through CAMHS in my area, shouldn't they be the one's doing it? It sounds like the system is really broken. And yes, it's rubbish you need the school to help or you can't get a diagnosis. Does the school have a school pyschologist you can request to see, the school nurse might know? Maybe find out if it is just you need someone to fill out a questionairre? I'm sorry I dont' fully know the english system (scotland here). I would also maybe try get everything in writing so you have a paper trail.

Other than that, could you go to the the GP and ask to be referred to councilling? He sounds like he could do with some sort of therapy? I don't know if you can afford any session privately, just to get him some help while you sort out the mess with the pathway? I would look for someone specialised in neurodivergent kids as they would be able to deal with that possibility. You need the school for a diagnosis, but you don't need them to get him some to help him in the mean time.

School is a very confusing place, finding a way to talk about it with him is an idea too -things like drawing together and talking about the pictures, or toy play -where they toys have the problems, and it lets him talk about what the toys are doing/feeling, it might be easier for him as it's not direct, which can be tricky for some kids. I've also done post-it note conversations, and even questions with tick-boxes, if it helps to find out what's bothering them.

My daughter was struggling so much with school, she asked what the point of life was, she was 8 at the time. I tried the GP for a referal, as I feel she has ASD like me and her brother, as she has always struggled socially. CAMHS refused saying it wasn't troubling her enough? It's like they won't help until children start harming, which is not the point parents are trying to get their kids help.

But I think it's also easier to get through to kids at a young age. I told my daughter that I believe her that she does struggle. It made her feel a lot better, and more able to discuss the things that make her unhappy at school. She improved a lot from just feeling heard, and knowing she can talk to me about thinsg that upset her. I could tell her she is like her mother, but you can also find role-models in media, even in cartoons and books, characters with traits and struggle that he can relate to.

I think it is often the cruel irony that school can make children unhappy, yet the school don't see it. In my case, the teachers are helpful, and are willing to try things to help even without a diagnosis. Sometimes doing your own research and finding things to help your child is all you can do when you are waiting for the proper systems to actually work.

Best wishes.

Hi Kathryn89,

I'm so sorry to hear that your son has felt this way.  Hopefully the online community members can offer some advice in relation to this situation.

The National Autistic Society does not currently operate a crisis or emergency service. If your son is finding it hard to cope or has thoughts of harming himself, please seek help. If you feel he is at risk of immediate harm, dial 999 or contact one of the mental health crisis lines listed on our Urgent Help Page: https://www.autism.org.uk/what-we-do/help-and-support/urgent-help.  

If it’s not an emergency but he's still struggling, speaking to a health professional can help. If your GP is closed, you can call 111 for NHS support. In England, Wales and Scotland, you can now choose option 2 to speak directly with mental health professionals: https://www.nhs.uk/nhs-services/urgent-and-emergency-care-services/when-to-use-111/.  

Other free, confidential support includes: 

• Samaritans – Call 116 123, 24 hours a day 
• SANEline – 0300 304 7000 (4.30-10.30pm daily)  
• Shout – Text 85258, 24 hours a day 
• Mind Infoline – 0300 123 3393 (Mon–Fri, 9am-6pm)  

The school should have a complaints procedure listed on their website it may be worth making a complaint. 

You may also like to look at this link about getting second opinions about diagnosis.  https://www.autism.org.uk/advice-and-guidance/diagnosis/before-diagnosis/how-to-request-an-autism-assessment#:~:text=a%20diagnosis.-,Can%20I%20get%20a%20second%20opinion%20about%20a%20referral%20or%20make%20a%20complaint%3F,-A%20GP%20or  

I hope this information is useful.

Take care

Suzanne Mod