A Visit From The Autism Nurse

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Since Max’s diagnosis in February nothing has actually changed. We haven’t seen anyone, no appointments, nothing. Life has just carried on as normal. So I was pleased when last week we finally got a visit from the autism nurse.

Max and Evie were at school and unfortunately James was asleep after a night shift, so he couldn’t be there. My mum and my sister spend a lot of time with Max so they asked if they could be there too.

Between us all we had plenty of questions…

Does he have ADHD too?

How will it effect him when he’s older?

Is it Asperger?

How do I deal with the meltdowns?

How do I tell if he’s just being naughty or if it’s the autism?

Why is he fine at school and difficult at home?

How can I help him to shut off at night?

How can I make him understand personal space?

Why does he answer back constantly, why does he always have to be in control?

Of course a lot of these questions she couldn’t give me a definite answer to because all kids are different, and so are all autistic children, what works for one might not work for another, but she did give a lot of helpful advice.

We have two autism workshops coming up on the 8th and 22nd of June and she me assured me a lot of the questions I had would be covered during the workshops.

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First of all we were given loads of leaflets, which I never find particularly helpful because I always end up putting them in a pile with the best intentions to read them when I get a chance, but it never happens! I’d much rather someone just told me the key bits of information there and then.

She helped me to understand that autistic children need to feel in control, things can be very black and white to them, and when they’re not in control and there are no rules or structure, that’s when the anxiety can kick in.

I also realised that it really doesn’t matter if he’s just being ‘naughty’, or if it’s the autism because if it’s unacceptable behaviour, it needs to be corrected. Our aim is to help Max grow up into a happy and independent adult who can fit in to society and if we want this to happen we need to teach him how to do that.

Of course I appreciate his differences, and I think that they should be celebrated, after all they are what make him who he is. However, some of his behaviors will not help him when he becomes an adult, and so they need to be corrected now, as gently as possible.

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She also told me that Max will not be having a follow up appointment, partly because he doesn’t really need it and partly because they are cutting back on them (*rolls eyes*). So after the workshops that we have coming up, that’s it, no more help, we’re just left to get on with it and I’m not really sure how to feel about that…

I mean, I’m glad that they feel he doesn’t need any extra help, that’s great. But it makes me feel a little worried that it’s all on us, me and James are the ones that are responsible for making sure he grows up to be as independent as he can be, and that’s a huge responsibility.

Having said that, he will always have the support in school if he should ever need it. The autism nurse told me that it is very common for autistic children to get on well at school and be the opposite at home because they thrive on the structure and routine at school. As hard as it can be for us to deal with him at home sometimes, I am glad that this is how it is and that he is doing well at school, I just hope it continues.

As for Asperger’s, she agreed that he fits the profile for this due to the fact that he is intelligent and he didn’t have a speech delay. However, Asperger’s isn’t a formal diagnosis anymore, everything just comes under the ASD umbrella.

And now I’ll stop rambling before this gets any longer!

Thanks for reading.


Read my other posts on autism here:

Autism: Our Story So Far

The Day We’d Been Waiting For

What Next?

5 Things You Shouldn’t Say To An Autism Mum

Does Autism Effect Siblings?

Grieving For A Child I Haven’t Lost 

10 GOOD Things About Autism

14 Comments

  1. Verity
    June 4, 2016 / 8:42 am

    Such a similar situation to ours, in fact you could have been describing ours – 5yr old boy, copes at school but not at home, aspergers fits, controlling, answers back, highly intelligent but very misunderstood. Do your local offer any other workshops? Our son has been to sensory as he struggles and also a social group. He has ADOS in Autumn

    • June 4, 2016 / 3:25 pm

      Sounds very similar then. We just have the 2 workshops coming up in the next few weeks, then that’s it 🙁 x

  2. June 4, 2016 / 9:55 am

    Always so interesting Emma. Thanks for that. Yes, at the end of the day, a lot is put on the parents shoulders, and it is not easy. You can only do your level best for Max, and love him. If you ever feel ‘something is not quite right’ or ‘something changes’ then try and seek help. I know with Ashleigh, I was always told, there was nothing further to do, and to basically just accept and deal with the situation. I know Max’s situation is different, so I hope and pray he goes from strength to strength. x

    • June 4, 2016 / 3:27 pm

      Thanks Lynne. Yes I think all we can do is to try our best and get on with it. I’ll be sure to seek help if things change x x

  3. June 4, 2016 / 12:12 pm

    Such an interesting post and slightly relevant to our situation, so lovely to here other peoples stories.

    • June 4, 2016 / 3:27 pm

      It’s good to know you aren’t alone isn’t it. Thanks for reading x

  4. June 6, 2016 / 8:52 am

    You will be fab sweety!! You have got here so far without any help 😊 You many find you meet other mum’s in your area at the workshops and you can link in with them and share experiences too. Good luck on your journey with ASD #bigpinklink xx

  5. June 7, 2016 / 5:50 pm

    It’s awful that there isn’t more help and advise out there. It’s such a tricky condition to understand, I think you could research every day for a year and still not be 100% sure about what works for your child. Maybe that’s just parenting in general though!! He’s a real cutie by the way, a lovely cheeky glint in his eye. 🙂 Thanks for linking #bigpinklink

    • June 7, 2016 / 6:14 pm

      Definitely, I don’t think I’ll ever properly understand it x

  6. June 8, 2016 / 3:30 pm

    Hi Emma, having a child with autism can be frustrating, not because of the disorder (although it can be), but because of what I find to be a distinct lack of help and knowledge on the subject. Even among professionals.

    As a parent of a nineteen year old who was officially diagnosed with Aspergers two years ago, the system here in Greece is light years behind. I would say take all the help you can, when you can, as it will make a huge difference to your son and hopefully allow him to lead as independent a life as possible.

    #BigPinkLink

  7. July 2, 2016 / 12:57 pm

    I am currently studying to become a Special needs Assistant and hoping to focus on the ASD field so it’s always interesting to read first hand accounts of these kind of things. Cutbacks here in Ireland too are causing major hassle and delayed help for a lot of special needs children, it’s an unfair system at times for the children but you can only do your best.

    • July 2, 2016 / 3:19 pm

      I’ve wondered about doing something like this myself. As hard as it is being a parent to a child with ASD it is also very interesting x

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