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'
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Every Saturday will be about Autism, family and life.