I saw this information about Spectrum Live on the National Autistic Society and thought it may help if you are facing diagnosis, maybe you are just going through the process or you are still waiting for an assessment.
If you go along to the NAS Facebook page and give it a like you can join in on a live discussion about diagnosis. It takes place Wednesday 13th March at 7pm. I think this is a great way to grab all the information you need and answer all those questions that are going around in your head.
They will be covering the different routes you can access for a diagnosis, what an assessment should look like and you can also join a campaign to help reduce the waiting time in which people have to wait for their autism diagnosis.
You will be able to submit your own questions too so I will leave you with a link to the National Autistic Society website with all the information about the event, how to access it and how to submit a question in advance.
Please think about taking part as even thinking about going for a diagnosis came seem a bit daunting, the wait can be frustrating so you may get some welcomed support from others here. They will be talking to autistic people and families on what it means to get a diagnosis so you will get information from people themselves in a similar situation to you or who can give you an insight to what will happen further into the process.
Just think of it as a little support group taking place in your own home, technology nowadays, it's amazing eh? So here is the link......
Thank you for taking the time to read my post today, please join me again tomorrow for some telly talk on Pass the Remote Sunday but for now I hope this helps and you all take care now.
A few weeks ago I caught sight of a tweet which was in fact a survey to find out what autistic people would think if their neurotypical parents referred to themselves as autism mum/dad/parent. Well this intrigued me as I had actually referred to myself being an 'autism mum' on a couple of my social media profiles. I know......oh heck I'm having to confess here but bear with me as I would like to explain why.
I don't really consider myself to be a neurotypical parent to start with so I suppose one reason for autism mum is that I am choosing to self identify as autistic without a diagnosis. That's probably another debate for another day but that suits me. The other reason is that of course my boys are a huge part of my life, I love them more than life itself. I am a single parent and Autism has been a massive part of our lives but I also help to support other families too as a volunteer with the National Autistic Society Derby and District Branch.
So you can see my life is full of Autism and I love it, I never mean to centre myself in it at all but act as a buffer for those who need me. I've never referred to myself as a buffer before but I do remember when Mr T received is diagnosis, for some parents this can come as a bit of a surprise sometimes and leave families a little lost at first. The thing is though when we do hold support groups, everyone in the room whether it be parents, carers, autistic people or those working in the health sector and education, they all feel passionate about wanting the best for their young people or for themselves.
So for me being an 'autism mum' meant that I was a mum first and my world revolved a lot around autism in a good positive way so I wanted to put that out as a beacon for everyone to be able to connect too. I have read all the comments though relating to the twitter survey and found it so enlightening. I had no idea it may not have been a good way to identify oneself and can see it would be slightly wrong coming from a neurotypical person but I have still since taken the decision to change my profiles in light of this and would totally respect the way in which this would make other people feel.
I do hope that explains a little why I did give myself the name of 'autism mum' and I hope it all makes sense. I have probably totally over thought it as I tend to over think all sorts of things but I just found it very interesting. This is what I do love about social media, we can have a healthy debate and give views and opinions, sometimes we just need to make people aware of what they don't know. Every day is a school day is what I say to myself, we are constantly learning, even as a middle aged woman like myself.
Thank you for reading today, please join me again tomorrow for Pass the Remote but for now you all take care.
I'm really proud of Mr T this week for making a decision by himself and choosing whether to take part in an activity. It is difficult for autistic people to contemplate whether to choose an activity as they involve a lot of social interaction which can be exhausting. I know for myself I find some events a big challenge but then end up feeling happy that I gave it a go.
I work myself up to some events thinking it's going to be worse than it really is even to the point of high anxiety but then it never seems as bad and I end up wondering what I worried about so much. It's the fear of the unknown, sounds like a tense scary movie eh? No really in some cases I have to visualise the whole event from planning the route to get there (in detail), making sure there is somewhere to park if needed, I will result to the bus or a taxi if it's all a bit too much and then I like to know the layout of a venue too so that I know exactly what's what. OMG if it's somewhere I haven't been before then that's a major issue. I have been known to give a place a trial run before the real thing.
Oh bless Mr T and his venture into an activity if that's what his mum goes through. He hasn't really been big on going to any after school clubs or activities and although I have encouraged, I've never made him go anywhere because as you can see I know how hard it is. Mr T announced he was going to go and try a choir session held at college on a lunchtime so I thought this would be great for him. He had sourced it out or been asked and decided yes, he was going to give it a go.
I went to pick him up after the session and asked him how it went and he didn't think it suited him, he said 'just pick me up at the normal time next week'. I quizzed a little to see what the problem was, not too much as he doesn't always want to talk about things but I did get to the problem. The choir was for the whole school to take part rather than a small choir from the part of the school where he was studying for Post 16's. This meant he would have to interact in a mainstream environment which I don't think he felt completely comfortable with and found it a little overwhelming.
That's ok though, the fact is he made a decision he was going to try it and found out for himself whether it suited him or not. Maybe there will be a chance to join something else in the future but it's a start. I suppose this post continues from last week with the decisions that we make but again we have to try. Fair play to Mr T, for now we will carry on singing our heart out in the car to The Beatles and for him a choir is on hold but hey our choir of two is fabulous for now and very funny.
It's only funny because I get the lyrics wrong sometimes......yikes I bet John Lennon is tutting at me from above and if Mr McCartney is reading this (yeah right) then I do apologise but just so you know, I did bring my son up with a great taste in music and he gets all the lyrics right!!
Thank you so much for reading today, please come back for more tomorrow when it's time for Pass the Remote but for now.....
I was reminded of a funny memory the other day. It is one that crops up now again especially when there is a time of deciding what is realistically achievable for an autistic person.
Well for me it is learning what is possible and sometimes the only way to learn is to give it a try. A while back when Mr T was still at school he went through a stage of saying ' I can't do that I'm autistic'. I think they may have been having a project about autism at school, I can't quite remember what exactly triggered it off.
Whenever I asked Mr T if he would tidy his bedroom he would say ' I can't do that I'm autistic' or to finish eating his dinner, the same thing ' I can't do that I'm autistic'. I do remember at that time having to have a re chat about his autism with him to try and grab exactly why he thought he couldn't do certain things. I explained to him that yes he may struggle to do some things but not everything and sometimes it is good to try new things.
So he realised he could eat his dinner, except for certain foods and textures he doesn't like but he will try new foods. He will tidy his bedroom now because he realise it's a help to me and it is actually important to be in charge of his own space. He is a teenager and his bedroom reflects that like any other teenager but I haven't heard him ever say that he can't do anything now because he is autistic.
In fact just last week we discussed the possibility of being assessed for travel training. This is a scheme set up to enable people with disabilities travel by public transport. I know, if you're a fellow parent you may be feeling my pain right now because in one way I need to let him go and try and the other part of me is shouting 'OMG there is no way it could be possible'. It is finding a balance of of what is achievable in a real sense and thinking it's a cruel world out there sometimes and Mr T won't be understood.
There are other worries which I'm sure are quite normal such as a bus not turning up on time - would he be able to ask for help? All things that we think about but how do we know unless we try. He would go through an assessment to see if he could go for the training and then if they say yes then he would be taken through the process of travelling over a period of time until he can do it independently. When we asked Mr T whether he thought he could travel on a bus his reply was ' who knows, but sometimes we all have to try'.
So we will see, he wasn't too keen when we first asked him but then I think he mustered up some confidence and wondered what the Fat Controller would say. If you do watch Thomas and Friends you will see that there is some brilliant scenarios which result in a positive empowering message so I can't fault Mr T for watching that at all.
It is difficult to make decisions for any of us and we all question ourselves as to whether we can do something. For our young autistic people we have to be there to give extra support but try and unravel a little of that cotton wool we so want to wrap them up in. It is hard.
If you are in the Derby City Council area and would like further information about Travel Training then you can find it here:
Thank you for reading today, please join me again tomorrow for Pass the Remote Sunday but for now......
Every Saturday I will be talking about Autism and will review any useful information which may have been highlighted at any support groups in the week.