This week there was a worrying report out that Autism diagnoses could be reduced under a new NHS plan for the South West London area. Only a proposal to be considered at this time so no definite action for now but how does that make you feel? Just seeing the words ' diagnosis' and 'reduced' put fear into me.
The National Autistic Society are deeply concerned as I think everyone would be after reading the article. This is a service who consider themselves under intense pressure with waiting times up to ten months. They forecast around 750 assessments a year but are actually dealing without twenty five referrals a week.
I think this is a pattern that is happening in many areas but to cut them down? How does that work? So we just ignore everyone else and let them just cope? Receiving a diagnosis not only allows a person to have access to vital services it can give relief and peace of mind to the whole family. I can understand that the NHS has to make sure people are receiving the correct diagnosis but this cannot come down to money, people have to come first.
It is a service under immense pressure and professionals are working hard and doing their best in these circumstances, yes it needs improvement and I realise it does come down to funding but we cannot compromise peoples lives and allow them to suffer. Lets find a way to improve rather than making these cuts, preventing people and families becoming even more vulnerable.
We realise now that other health issues can branch off from Autism, such as ADHD, dyspraxia, sensory processing, anxiety and depression to name a few and when it comes to depression we are trying to strive forward to improve on mental health issues not ignore it. This is reversing the process instead of positively moving on and helping within this field, especially when it comes to children.
The diagnosis stage cannot be compromised and it is a service that we cannot afford to lose so I would want people to come together and value it's importance, it is a cut to the NHS that cannot happen. It's hard isn't it when the government has to pull in the purse strings somewhere but surely this can come without taking away vital services. More research needs to be done regarding Autism, it will continue to be a fascinating subject. Why are the referrals increasing? Is it because we are more aware? I think it could be detrimental to an individual to let them go without diagnosis, even harmful and they may feel failed by the system so let's make sure this doesn't happen.
It hasn't happened yet, again these are just proposals so lets not panic but keep vigilant and see what happens in the future. I for one will be watching how this progresses as I do feel very worried for other families. If you haven't seen the article it can be seen online here
I would love to hear your views, feel free to leave me a comment......
Thanks for reading and I'll be back for my tv feature 'Pass the Remote' tomorrow.
It's true isn't it, we as parents and carers are forever fighting for something regarding our children's autism. It's never an easy ride, just as you think you have one situation cracked, up pops another problem.
I here of a lot of peoples struggles with running support groups and my heart goes out to each and everyone. I have had a small, quite trivial problem this week in that I was applying for a service for my son, yes yet another form to fill in. There is one thing as autism parents we are very familiar with the old form filling process, something I find a bit hard sometimes and I'm sure some of you do too.
I needed some medical evidence to go with my form, amongst other paperwork I have to send with it too so I requested a letter from my GP, just a quick note to confirm his condition and the relevance it had to my form. I popped the request in the prescription box so that I didn't bother them with an appointment, thought this would save time and I didn't want to use an appointment some else would need. I'm a bit funny about that. A few days later I pop to see if my letter is available and I am told my GP cannot write one and my request would have to be passed to the local Consultant Paediatrician. Now that delays me sending the form off but it's not the fact I haven't been able to obtain my letter it's the excuses for which he couldn't write it. He didn't feel as though he could obtain enough information as he had only seen my son on two occasions and he seemed to 'cope quite well' and also that he didn't know too much about autism.
Cope quite well??? I'm glad he could make that assumption in two ten minute appointments of seeing him when I have been living with his autism for thirteen years now. The reason he copes for a few minutes at the doctors is because I have spent time to prepare him for it and talked him through the process and not only that have been using all the techniques I can think off to keep him occupied in the waiting room prior to the appointment.
Frankly I think it's a bit worrying in these times that at a GP practice there is not a doctor who is clued up on autism, maybe a little training needed there then? I'm sure it differs from surgery to surgery and my gripe is not the fact that I didn't get what I wanted, at the moment, but that fact that parents shouldn't have to hit a brick wall when it comes to asking their own GP for a simple letter to prove a life long diagnosed condition.
This highlighted the fact that the first impressions of someone with autism to those with little knowledge of the condition tend to come over as being ok and can't see any problems, especially with our high functioning children. We've all had experience as parents with comments such as 'well he/she seems ok', 'but he'll/she'll grow out of it won't they?' or 'oh they aren't as autistic as my mums friend grandson/daughter' I don't mind these comments really, they hurt my ears at first but we are in that prime position of being able to educate people and raise awareness, not in a patronising or critical way but in a nice calm nurtured way.
I often think when in the presence of professionals in the field of autism, who is the actually professional here? I've been able to work alongside a multitude of healthcare professionals just lately in helping to try and improve the autism diagnosis pathway for the future. At first when I sat in a room with people who had trained for years and received degrees I felt quite intimidated and then I thought no Sue from the Brew!! I am the one representing all those that know first hand what autism is all about, living, breathing it 24 hours a day and it is 24 hours because if your child isn't one up all night then as a parent you are usually awake in the night worrying about the next day or overthinking about other stresses and strains. I have every right to be in that room as an end user of the services they provide.
I don't mean to rant and my problem at present is quite small really but it just made me worry as the GP is usually the first port of call and this is where we are sent to hopefully get the answers we need instead of using vital hospital resources. We are told to visit the GP instead of going to A&E but if your GP doesn't know the answers then that's not good. Maybe for an infectious disease or for cuts and burns they can assist but we need the same type of assistance for life long disabilities too. It is probably normal practice to go back to the Paediatrician and not the GP but I haven't been back to them since diagnosis and I did actually get one these letters issued by a locum doctor last year so was a bit confused as to where I do actually go.
I sure it will get sorted and I thank the NHS for all they do, they do a dam good job under a lot of pressure. I just want an awareness of autism everywhere, too much to ask? we'll see.
Thanks for reading.....catch you tomorrow for 'Pass the Remote'
It's the new craze isn't it? All of a sudden we were spinning these little objects on our fingers and asking, like I did 'Is that all it does?' I thought it was going to be the new yo yo or be able to do lots of tricks with it but haven't managed anything fancy with ours, only to launch it across the living room.
If you have been living on another planet for the past few weeks the fidget spinner is the new stress toy. It has been advertised to help people who have trouble with focusing or tend to fidget a lot especially those on the Autism Spectrum, people with ADHD and anxiety problems. They are quite relaxing when you just sit and just spin them, even when you get over the fact it isn't going to perform a major trick. The whole idea is to keep calm and take away the stress, it makes a little bit of noise as it's spinning and has a slight vibration that all add to a nice relaxing experience.
The thing is although they were aimed towards the Autism/ADHD individual they ended up being purchased by everyone really. I suppose it's different from the bottle flipping and Pokemon Go but the spinners have come in for some controversy. A lot of schools have banned them as they are distracting students from their work. For a start who is letting kids play with them in lessons? It all follows conkers and throwing snowballs as a health and safety risk, kids just can't be kids anymore. I know they have to be safe but really? I'm going to say it, like an old parent......'it never did us any harm in our day' If schools are also going to ban mobile phones then give them a break when they find something else to play with.
I can see that they may be a distraction when a few hundred kids in the school all start playing with them at once, but in a mainstream environment my concern is that these fidget toys are taken away from the very people that get some relief from using them. I would like to hope schools just use their common sense and discretion with them as they are classed as therapy.
I've known quite a few people comment how they are helping with attention and anxiety so it's got to be a good thing. For everyone else it's like a lot of things, it becomes the new craze and then kids move onto something else. I bet whoever invented them is doing ok and living for the moment. Makes me wish I could come up with a snazzy idea that everyone will want to take part in. It was only a plastic bottle before so the worlds my oyster, anything is possible surely. If you see me on The Gadget Show you'll know I've made it in life. Move over gadget geeks, Sue from the Brew is coming through.
I'm not sure it beats the fidget cube, that is still my favourite. I keep buying these things for my son and he's just happy with a paperclip or blu tack, all of which I tend to find whirling around my washing machine. I never check the pockets you see. So how do you find the fidget spinner? Any tricks? Leave a comment below as I would love to know whether it is helping anyone. If you've also had to claim for broken windows or knocked granny's specs off with them then also let me know the hazards of using them.
For now though less fidgeting and more spinning, have fun, and no detentions please!!! Catch you for a bit of TV chat tomorrow on 'Pass the remote Sunday'.
My son has this thing for calling someone a 'cooker' rather than chef, which I think is quite good and why shouldn't they be called that, cooking is what they do. The word "chef" originates from the term chef de cuisine which means the director or head of a kitchen. From the autism world I think 'cooker' describes it better.
He came home all excited the other day from college and told me about how they had watched a video in his catering class about cooking poached eggs. This doesn't happen an awful lot, sometimes when I ask what he has been up to at college I get a 'ermmmm. I can't remember', so this was one of those super exciting events when I got some feedback. You know those days as an autism parent? It's like Christmas and winning the lottery all in one. Yes my child can venture out of the world of Thomas the Tank and Fireman Sam and we can talk about other stuff.
So containing my excitement but keeping enough there to listen to his experience I learnt all about how he had cooked these poached eggs in clingfilm and proceeded to show me the 'you tube clip'. I hadn't seen them cooked this way so I set him a challenge to show me and he did.
With a little help he lined a bowl with clingfilm, brushed it with melted butter and seasoned it. I had put a pan of water on to boil and turned it down to a simmer. He wrapped the egg up in the clingfilm and popped it into the water to cook. He repeated the process with another egg and after a few minutes we took them out and he unwrapped them onto some beans on toast. He said they were awesome and proceeded to text everyone he knew with the good news, complete with photo. His texts are so lovely to read and very funny. I love the way even in conversation as well as his texts he calls people, not necessarily by their name but by their title. For example: he will text my mum, (his nan) about the eggs and type ' Good news,, I have shown your daughter how to poach eggs' or to his Uncle, 'Dude I showed my mother how to cook poached eggs, so try it with toast' When he has texted he will inform me that he has sent a message to my mother and my brother. So formal but he gives us a giggle that's for sure.
I was pretty impressed, I suppose it's a good way really as the egg all stays together in a neat package. I know what your thinking though as I did, is it really safe to cook something at a high temperature in clingfilm? I looked on the web and some say yes, some say no or just check the information of the clingfilm packet. The thing is we have other little resources in our kitchen to cook poached eggs. I have a poaching pan and those silicone pouches so when we get a moment I might just show him another way to cook them that is less fiddly.
I was so proud of him because he found something else to talk about and I loved it. When he finds something that interests him such as this, he throws himself into it 100%. The passion and excitement shows, he wants to tell the world and we will be talking about this for weeks.. You Tube is so educational, the 'how to' videos are brilliant, you can throw away an instruction book now and just go online and learn how to work something, fix something, cook a meal or apply make up. You could even mentally digest an instruction book before throwing it away, record your own vlog and go viral yourself.
So there you go a budding cooker, might not be ready for Masterchef yet but hey who knows, the best cookers must start with boiling an egg surely. I think we may just do more cooking and baking together as I just feel he came out of his shell (see what I did there) a little and ventured into another world. The fact is that it is also good to get him to cook safely as part of teaching him a little independence. He can do it, will take a bit of practice but I'll help him all I can.
Thanks for reading.....I'll be back tomorrow for 'Pass the Remote' - don't fight about it or lose it, just pass it.
Take care for now.......
Every Saturday will be about Autism, family and life.