Wednesday, 3 February 2016

Without an ASD diagnosis, we would not


It appears we are some of the lucky ones.  Our boys were both diagnosed with ASD by the time they were four years old and they both received appropriate support from services, organisations and in their different school settings.


But what if we hadn't?  The National Autistic Society were on BBC Radio yesterday to say that NHS England must monitor waits for an autism diagnosis. According to the show, in some areas of the country people are waiting years for a diagnosis. If people move this effectively means they are not getting diagnosed at all. 

Without our diagnosis we would have missed out on access to certain therapies, support from local and national organisations, funding and appropriate placement of our children in schools. Mostly though, without a diagnosis no-one would understand why our boys are the way they are and do what they do and this is the biggest key to their progress. 

Without an Autistic Spectrum Disorder(ASD) diagnosis:


  1. David would be in the wrong school (as his school requires an ASD diagnosis for admission)
  2. David would not have learned sign language or PECS David may not communicate at all
  3. David would not be able to play near other children
  4. David would hit and hurt people
  5. David would not be potty trained
  6. David would not sleep unless exhausted
  7. David would scream and cry a lot
  8. Anthony would have no friends
  9. Anthony would be struggling at school
  10. Anthony would be considered naughty
  11. Anthony would be frightened
  12. Anthony would not know how to swim or ride a bike
  13. Anthony would be angry all the time
  14. Anthony would feel like a failure
  15. I would feel like a bad mother
  16. I would fear my boys  
  17. I would feel isolated 
  18. We would have no understanding at all of our boys 
  19. We would not be able to communicate with our boys
  20. We would not be able to go on family days out or holidays
  21. We would not be able to leave the children with other adults
  22. We may not even still be together as a family
Incidentally 22 is the number of months you might have to wait for an ASD diagnosis if you lived in the South West of England. Parents do not seek an ASD diagnosis for convenience, it's part of being able to live. 

Links
Our blog - SEN: Accessing specialist units or schools
Our blog - Never prouder of last place - Anthony's swimming gala

External links
BBC Radio - NHS England must monitor waits for autism diagnosis

As listed in: 

Mr and Mrs T Plus Three

26 comments:

  1. It must be so difficult waiting that long to have a diagnosis - I just can't even imagine. Thanks for linking up to #coolmumclub lovely x

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  2. Hugs to you. JD's diagnosis took 6 months from first enquiry to official letter. I had no idea how fast that was until I started talking to parents in other parts of the country. I completely agree that an official, on paper diagnosis is crucial to getting the support you need, especially at school in our experience. 22 months is much too long.

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    1. In 22 months our kids would both have started school before they'd have a diagnosis. Would have been soo much harder.

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  3. I've obviously written this from the prospective of us as parents. Thinking about it again I think I'd change the last sentence to say 'People' instead of 'Parents'. You shouldn't have to wait for years after seeking diagnosis as an adult either!

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  4. We're like you, our son was diagnosed at 4 years old and he has all the support that is available to him. I shudder to imagine how things would be without his diagnosis and I do feel for all those families who are struggling and waiting to get support. I guess we are very lucky. X #SpectrumSunday

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    1. Glad you guys got the dx and support you need. That's great.

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  5. It's so true - our girl was diagnosed young and I'm ever thankful for that. Am sure it made acceptance from everyone come sooner, and we've been blessed with a great school. Thanks for reminding me to count those blessings! Sad for so many others though x

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    Replies
    1. Absolutely, it's so unfair for others.

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  6. I so wish we had had a diagnosis at 4. It took several years and a struggle with an unsupportive school. I can't believe the change a diagnosis and a different school made.

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    Replies
    1. I'm sorry to hear that. My heart honestly aches when I read it. As if we're not struggling enough sometimes, no one needs to have a struggle for the diagnosis on top of it all. Glad you now have it and it's making a difference. Xxx

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  7. Wait times are terrible and I fear it is only going to get worse. We got through the process very quickly. I asked for referral in the June, we got a diagnosis in the February. Unfortunately our services aren't great here but I got the school that will hopefully help.

    Thanks for linking up with Small Steps Amazing Achievements :0)
    x

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    Replies
    1. The right school is a big rock and one reason why WE WILL NEVER MOVE ( or at least for the next 6 years). Glad your wait wasn't long. Are there any services you wish you had? We have an OT shortage at the moment and it's pretty frustrating.

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  8. I can't believe how long people have to wait to get the help they need. Heartbreaking when the diagnosis can do so much good. Thanks for linking up to #TheList x

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    Replies
    1. Agreed. Some people aren't sure they want a diagnosis. But if you want one and can't get it because of wait times that must be pretty hard to cope with! Thanks for commenting.

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  9. 22 months would be amazing in most of west yorkshire. Most wait much longer.

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    1. That is awful. I believe the NHS target is 13 months (don't quote me). I've seen articles of people waiting six years via the NAS #whythewait campaign. By that time I'd probably have self diagnosed the boys but it's the access to services, education and support that I think would have really suffered. Our family would have found things more difficult as a result.

      It's quite simply not fair.

      Delete
  10. Great post Ann. We waited three years for our diagnosis, partly because we moved a few times due to my job and partly because the system just wouldn't allow it to happen any quicker. We haven't accessed much support since Hayden's diagnosis in November but at least I now know where it is if I should need it. Thank you for joining me this week on #spectrumsunday. I really hope to see you again this week xx

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    Replies
    1. It must have been frustrating. Glad you got the dx and have had some sign posting now. Hope you are better this week, see you on the linky xx

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  11. It is crazy the difference not having a diagnosis makes. They decided that my son didn't have autism and it shut so many doors that were previously open and helping him because it was assumed he'd get the diagnosis. The school choice being the biggest thing for us.

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    1. That's terrible. It shouldn't be that all this relies on the diagnosis, you should get support for what you need and a dx should just inform the professional more precisely about his requirements. Bully your GP if you need to get referred directly to things.

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  12. I am so glad you got an early diagnosis and your boys got the help they need. Thanks for linking up to #TheList x

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    Replies
    1. It has honestly made such a difference. Thanks for hosting.

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  13. Hi, my 3 year old son is currently going through the assessment process. I am keen to have a diagnosis before he starts school next year so I can ensure he is placed somewhere with the right support to be able to reach his full potential. He will be 4 soon - if I don't get an assessment date before he is 4 then I have been told he will be put in the queue for 4-11 year olds and there is a 14 month wait for this where I live. Seems ridiculous - in the meantime children and their families are living in a very confusing state. Looking forward to reading some more of your blog.

    ReplyDelete
    Replies
    1. If you are based in the UK then you might want to look into an Education Health & Care Plan, which will detail what your child will need from the school soon. I've got done details on my site (search EHCP in the search box in side bar on the web version of our site) but you can also visit Special Needs Jungle / IPSEA for detailed information. Happy to have you here, hope my posts are useful. Xxx

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  14. We waited 2-3 months for a referral to Community Paed's and then 18 months for a diagnosis. And only then because I called, and emailed, and harangued for a date because the LA lawfully removed all therapy support during the wait because he had neither a diagnosis nor an EHCP. Horrible horrible years.

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

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