Newby, introduction.

Hi I'm Vicky Mum to 7 and was a foster carer for my nephew too who is currently in University. I have 4 boys, 3 of those have ASD and my eldest boy has a neurological hearing impairment but has always presented with strong Autism traits which we were told was connected to the hearing loss, though I've always disputed this but didn't get my warrior on until later on. I also have 3 girls, the eldest has intractable epilepsy, learning disability and autism traits and my youngest girl has ADHD and other behavioural disorders. I know that I often get comments made that suggest I'm some sort of mad woman but my outlook is very fierce, we don't allow a disability to define or rule and there is no use of disability as an excuse for not being able to access society and all it has to offer. I also am a part of different social media groups where I offer help and support to those in need of it.

I have a huge knowledge of both Autism and Epilepsy as I researched and reached out to many different online communities as I could. I would read medical journals and learned about medications and alternative treatments. I did the NAS early bird plus course as well as reading as much information on the NAS website and other social media communities so I would know what I was dealing with. Knowledge is power and I wanted to understand the medical jargon and what the medical professionals reports meant. I researched medication and treatment and this it would seem was my special interest and here we are today. 

I am not posting for myself as it were, I'm at a loss as to how vastly different the various PCTs and LEA's are in terms of diagnosis criteria goes and I am unable to advise or help a friend who lives near Manchester on a situation she is in regarding her son who without a doubt has ASD but she's hitting brick walls because his school won't back her up and have made her feel absolutely awful as she would flag things up to be told that they didn't have concerns yet he's on the SEND list, he accesses the nurture room and has regular IEP's. He is also compliant at school as he's terrified of being in trouble so it's when he's home and is able to let off steam that his anxiety and difficulties are noticeable. It seems her local Hospital Trust is one that has yet to update the new diagnostic criteria and the paediatrician has said he had 'subtle' traits. No such thing! He's more noticeable when out of the rigid structure and routine that is school, he's mostly been observed at school, O/T has seen him twice and SALT are involved and reports from them have backed my friends concerns as he was obviously anxious and didn't want to engage at all, something about the appointments set him off for sure. 

She has been told he doesn't meet the criteria for diagnosis and this was after someone on the panel who hadn't met her son phoned her to ask about his difficulties and then observed him at school once, she was quite supportive on the phone and told my friend her upset was normal under these circumstances and that she would be in touch soon with a diagnosis, then she went to the school and boom he doesn't meet the criteria. I want her to get a second opinion from a different PCT and also have advised her to maybe look into private psychologist. The school refused to refer to the Educational psychologist and preferred to use a different agency to do reports. This school has an outstanding OFSTED but has no child with an EHCP at all, but several children they claim funding for. The SENCO refuses to support my friend at all and makes her feel she is making it up and she's not like me, I'm a pitbull and won't let it go but she is easily fobbed off :( I've gone on, sorry. If I've not been clear I do apologise, it was in my head earlier but I'm having trouble finding what I want to say today.

  • Hi AusomeWarrior, I smiled so much when I read you had got your warrior on ~ I recently got mine! :-) You really are an ausome warrior though, with your big family and big giant heart. 

    Your friend’s situation is not uncommon, unfortunately, and often, it is only those parents who can get their warrior on, who get the help and support they need. My only suggestion would be to contact an advocacy service. The authorities are less likely to try to get out of their responsibilities if a third party is involved and the advocacy services, are well aware of these situations so they know what action to take. 

    I don’t know what all those capital letters stand for, but I do know parents who are struggling, sometimes daily, with their children’s schools and trying to get the right support. I have seen warrior mums succeed, but it is incredibly difficult, as you know, and yeah, the only thing I can think of to suggest is to get an advocacy service involved. Under the rules of the new care act, everyone is entitled to that. A visit to a private psychologist, as you suggested, might be the least stressful, the easiest and quickest approach, and might be the most fruitful. He deserves the right level of support and his Mum needs the support. This is the ‘invisible’ side of autism and we have to somehow make people realise our struggles are real. It might be a case of gathering as much information as possible, putting it altogether, and deciding where best to take it. The advocacy support groups can help with this. We all want to succeed in life, it’s just that some of us need more support or a particular kind of support, to get there and without support, the consequences can be devastating, whereas the level of support needed, might be minimal, but if it’s the right suppprt, it’l make all the difference. I trust they’ll get the support they need.