Getting an ASD Diagnosis (or not): Part 3

Since January 2011 the Monster has been in the process of being diagnosed with… something.  He’s still so young – currently just four years old – and this seems to make it harder to decide what to diagnose him with.  When we set out on this journey we knew the road would be long but we had no real clue what to expect.  We didn’t know what tests they’d do or what sort of waiting lists we were facing, and we have spent the time justifying our reasons for pursuing this.  I’m sure people think they are being supportive when they tell us that all four year olds move constantly, behave inappropriately, or are afraid of tomato ketchup, but it actually makes me feel worse.  It makes me feel paranoid that I’m looking for something that isn’t there, and like I’m a bad mother who can’t control her child.  At the start, I scoured the internet for information on what to expect but I couldn’t find what I needed.  As we reach the end of the assessment process I’m charting our experiences partly for my own record, and partly in case it helps someone else.

Click on the links to read the first and second parts if you’re new to this blog.

Last November we reached the top of the speech therapy waiting list and were finally invited for an assessment.  This was in another new building, and just sitting in the waiting area was an eye opener as the reception is used for a number of clinics and whilst we were there two strangers discussed their mutual friends made during time in prison.  Thankfully, as they moved on to which “cardboard gangsters” had fathered the female’s children, we were moved swiftly on to a more private area.

Although the appointment was to focus on the Monster’s speech, because he is being assessed to see if he has an autism spectrum disorder they were also looking at his language skills.  I don’t think I’d ever thought about how often I prompt him each day: On being given a gift – “what do you say to your granny?”  When someone greets him – “say ‘hello’ to Uncle Frank.”  Or the old favourite – “Monster, Aunty Jeanie is speaking to you.  What do you say?”  He doesn’t need it every time but it’s very regular.  On this particular day, the SALT had to prompt him to say, “goodbye,” to his dad when he left the room, he sat with his back to her whilst they played, and (once they abandoned the assessment because he couldn’t sit still enough) he was practically sat on her knee to tell her all about Lightening McQueen.  Sometimes I wonder if I’m crazy for going through all of this, but days like that remind me why it’s important.

I was pleased that the speech & language assessment was thorough – our therapist also came out to his nursery, called me with feedback and then came out to the house to work with him there.  She agreed that some of his vowel sounds are out, but that it’s not something that they’d generally work on at this stage.  She made some recommendations about using visual “now & next boards” in the nursery to help him transition between activities but otherwise we agreed that at this time it was best to discharge him.

It was just as we were discharged from the speech therapist in January 2012, a year after we’d started this whole process, that we finally got our occupational therapy appointment.  This was the appointment I’d really wanted.  No matter what diagnosis he does or doesn’t end up with, the occupational therapist focusses on helping him to get the most out of nursery and school which is all I really want.  Don’t get me wrong, initially I felt I was still banging my head against a brick wall, being told that because he didn’t essentially shriek in terror at background nursery noise that he didn’t have a sensory problem, but as our OT has got to know the Monster she has come to see what we’re talking about, especially his constant movement.  Although his impulsiveness has clouded his movement assessment results, she did invite him to be a part of a weekly movement group with two other children his age.  He has been able to learn some new exercise games and practise his pencil grip (with much resistance), and his OT has been able to try out a variety of calming strategies.  So far we’ve tried:

  • a “hug” vest – a sort of velcro-on top that feels tight and gives some extra feedback.
  • a chew toy.  Actually, we’re on our second already because he chews straight through them.  Apparently a suggestion is to try dog toys…
  • a weighted dolphin for on his knees – he won’t wear it round his neck.
  • rolling on a “peanut” physio roll.

Of all these things, the chew toy and the “peanut” have been most successful, but what I have appreciated most is that she never makes me feel like I’m crazy.  Tomorrow is his last group session with her, and as she’s about to start maternity leave, I’ll be sorry to say goodbye.

That brings us almost up to date.  If you’ve read my blog before you may have noticed that two weeks ago the Monster had an ASD assessment across 3 mornings, and that we’ve already had the feedback.  However, it’s very late (or early, depending on how you look at it) and this post is long enough already so I will leave you here and will describe his assessment the next time I get two minutes to myself.  Until then, take care!

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2 responses to “Getting an ASD Diagnosis (or not): Part 3

  1. I hope you do find some answers, I thjink the worst is knowing, as a mother that there is something not quite right but not having a name for it or feeling like the professionals dont see what you see daily. My eldest was finally diagnosed with ASD this time last year at the age of 7, at 6 he was diagnsed with ADHD which we had figured out long before his diagnosis but apparently no-one will officialyy call it that until the age of 6! Good luck and I will check back in to see your next post x

  2. I can only imagine what it must be like trying to deal with all of this on a daily basis. And as The Rambling Pages comments, the knowing something isn’t right, but not being able to pinpoint exactly what it is. I hope to hear some positive news on here soon about things moving in the right direction x

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