Unexpected Battle

I found out that to get Edward assessed for Autism I had to go to my GP and ask for a referral to a paediatrician.

I was expecting my GP to agree straight away. I had a lot of respect for him. He had been the one who had recognised how poorly Ivy was, when I had taken her in because I thought she just had a chest infection. He was the one who had dialled 999, sorted out an oxygen mask and canister to help her breathe more easily and kept me calm enough to be useful throughout the situation.

I don’t think he knew much about autism though, or maybe he thought that it had become fashionable for parents to get their children assessed and wanted none of it. I found myself unexpectedly having to fight my corner with someone who I thought would be supportive.

His view was that Edward was an intelligent young kid who didn’t need to be labelled as having anything wrong with him. I explained that Edward was already becoming labelled. His current labels were, “difficult”, “rude”, “aggressive” and “self absorbed”, amongst others. He had no friends at school.  I explained that a label of “Autism” might actually help him get more support and at least more understanding. Reluctantly my GP agreed to make a referral cautioning me that the label wouldn’t do anything in itself. I had already figured that out.

We went to see Dr T., the paediatrician. She spent time asking us about Edward and concluded after the initial meeting that Edward was possibly a bit too sociable to meet criteria for a diagnosis. The report that she wrote listed Edward’s main symptoms as 1) Poor social communication and 2) Areas of special interest.  Dr T. did refer Edward to the local Speech and Language Therapist in light of his social communication difficulties.  It was a therapist called Mary whom I had worked with many years before. She was about 10 years older than me, very sweet and gentle and definitely, for want of a better word, posh. We turned up and she recognised me straight away. Edward came into her room, sat down and put his feet on her table.  I have no idea why he did this but it got the session off to a weird start. Mary asked him if he put his feet on the table at home. He said he didn’t. She asked him what he did with the table at home..  he seemed confused… she asked if we all sat down at the table for dinner at home… he said we always ate dinner on our laps in front of the TV. (I am a great believer in family meal times and I think I can count the number of TV dinners we have had on one hand.. I still have no idea why he was making things up).

Mary then showed Edward a series of pictures showing people in situations where they would have felt a particular emotion. She wanted to see if Edward could work out from looking at facial expressions what emotions someone might be feeling… a particularly hard task for a typical autistic child.

It was all going fine until we got to the picture of a woman who had supposedly accidentally burned a  shirt with an iron. Mary said to Edward, “What do you think she is thinking?” Edward replied, “She thinks she is going to get beaten up by her husband when he comes home”. There was a really long awkward silence and I could sense Mary’s concern for me. “Oh you are probably going to worry about me now… there’s really no need to , Nick and I are fine.” I spluttered. realising straight away that I had only heightened her concerns.

On the way home I asked Edward why he had said that he thought the woman would be beaten up by her husband, and he explained that he had read a poster about domestic violence in the health centre toilets before the appointment and that the picture must have made him think about it.

Mary was super. She saw Edward a few times in school and decided, having seen how Edward behaved there that it would be worth referring  him to  CAMHS  (child + adolescent mental health service) who amongst other things assessed children for Autistic Spectrum Disorders.

So, about 12 months after initially seeking a referral for an  assessment we were on our way to see the CAMHS team to find out if our son was actually autistic or not.

The assessment involved a few different things, the first was an family appointment with a psychologist and a paediatrician. They asked lots of questions about our family history, about Edwards early years, about his sleeping, his special interests, his response to different types of environments, his communication and lots and lots more questions that I have since forgotten.

One of the first things the professionals asked Edward was his age, such a normal question for adults to ask kids. Edwards response was, “7 and 5/8”, a far from normal response. I  remember that Edward spent a lot of the time during the appointment walking around the perimeter of the room. I tried to get him to come and sit down, but the professionals said it was OK for Edward to carry on walking around the room if he wanted to, so I relaxed and let him. He enjoyed being asked questions and was very happy to provide answers, so long as he could keep walking around the room. I don’t think he even looked at either of the women who were asking him questions, not  once.

When we left, Nick and I were satisfied that the women had observed the Edward we knew. Our quirky, clever and socially pretty clueless boy.

Edward had to go back for an appointment with the psychologist to be seen on his own. He was given a few different tasks to do, including making a story up with objects which he has already written about in the victory air punch post.

He was also seen in school by a specialist Speech and Language Therapist who rather than working directly with Edward wanted to observe him during a typical school day. At one point she observed the teacher tell Edward to put his book down. Edward apparently dropped the book on the floor where he was standing. He was following the literal meaning of the words but not reading between the lines. During a lesson the teacher noticed Edward looking out of the window when he was supposed to be working. She said, “What are you doing Edward?” with a tone of mild irritation and authority in her voice which meant that the meaning of her words were more like “Edward, stop daydreaming and get on with your work” . Edward picked not a jot of this meaning up and simply answered the question, “I am looking at the clouds”. (class mates snigger, teacher gets irritated).

Image result for clouds

After all the appointments the psychologist rang me and said that it was the teams view that Edward had a form of autism called Aspergers Syndrome. I put the phone down and felt a really strange mix of emotions accompanied with a cascade of tears.  I had suspected that Edward was autistic on and off for nearly 6 years but having someone else confirm this made it more real somehow. I had to have a mental talk to myself that went along the lines of.

  1. I haven’t suddenly out of the blue got an autistic son.
  2. I might not be an expert in autism but I know a lot about Edward.
  3. Edward is still the boy I know. I haven’t lost him. (return to 1 and repeat quite a few times).

Nick and I went in to see the psychologist. Nick wanted to know exactly how much Aspergers Syndrome Edward had; he and the psychologist went round in circles about this for what seemed like forever. Nick wanted a percentage figure. All the psychologist could say was that Edward was definitely on the autistic spectrum but that he seemed to be coping pretty well.

Recent research in 2015 by Dr Laura Crane of City University London on parents’ experiences of autism diagnosis, based on a survey of over 1000 parents in the UK has found that on average parents tend to wait a year after they develop concerns about their child before they contact professionals. Once they have approached a professional the average length of time that it takes to get a diagnosis of autism is 3.5 years. So judging by that, I took a really long time to contact my GP in the first place, but having done so it only (and I use that word with a hint of sarcasm) took 1.5 years to get a diagnosis for Edward.

We then had the complex process of working out whether, when and how to tell family, friends, school and of course Edward about the diagnosis.

I’ve written about how we told Edward he had autism here and how we told other people about his diagnosis here.

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13 thoughts on “Unexpected Battle

  1. I’m really enjoying reading your blog Lynne. It’s well written funny and informative. And I would think very encouraging for other people to read who are in the same situation.

  2. How different from the BBC drama the A word, where their son gets a diagnosis within the time it takes between sending out kid party invites and attending a party (what’s that, one week!)
    I’d like to tweet links to these words it is very helpful for practitioners, I work with 14-34 year olds who have complex mental health issues (psychosis- diagnostic uncertainty). Many have undiagnosed autism. I guess if you don’t have the resources to jump through all the hoops you have jumped through then you never do get a diagnosis. Adult services are a real nightmare and we often have to plug away to get things people need, so even though I hate labels, they are helpful.

    • Hello Louise. I think a lot of kids who do not have language impairment but who have autism can slip through the net and remain undiagnosed. They can then lack support and understanding that would make the world of difference to how they are perceived and treated by others. (not to mention how they perceive and treat themselves). Please do share this post with anyone who would find it useful to read. Thanks

  3. We asked each teacher if they thought T was on the spectrum. Grandma (a schools’ dr) had flagged it up when he was 18months. Teachers said no in varying degrees. TAs all said “yes, definitely”. When he was selectively mute for 5 weeks at the start of yr 2 and the teachers didn’t contact me, I decided he needed a diagnosis. That teacher fought me all the way, but he was in yr 3 by the time of diagnosis, with a teacher who has a degree in a form of psychology. She has been amazing. The day before the diagnosis the had told me that he wasn’t on the spectrum. He’s quite controlled at school, but the psych said it’s quite common that a child just manages to survive at school, especially if mum has taught some social skills.
    When I asked the SENCO whether they ever told parents that they suspected a diagnosis, she said they couldn’t because they are not medical professionals. That explains why when I worked at secondary we were often contacting parents and wondering why the primary hadn’t flagged it up. So many children who don’t have family who are aware of possible diagnoses could be struggling with less support than they deserve – it’s heartbreaking. Hopefully your blog might help some to go for a diagnosis that would otherwise be left.

    • Thanks for your comment Angie.
      Glad to hear that T has had a diagnosis now. No teachers every initiated any conversations with me about getting Edward assessed, although when I broached it with them, they were very supportive and thought it was a good idea. It sounds like you have had quite a battle.
      I didn’t realise that teachers felt unable to suggest to parents that they seek assessments for autism – it would be interesting to hear any comments about this, especially from teachers.
      I think a lot of children do remain undiagnosed because there is still limited awareness about autism and parents may not realise that an Autistic Spectrum Disorder is the underlying cause for the behaviours their child is exhibiting.

  4. I think you’re right, that the wrong ‘labels’ can be much worse for children than the right ones, and that a label doesn’t change a child, it just helps point towards what support they need. I totally relate to your mix of emotions (am remembering all that as I revisit my early blog posts!) x

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  8. I enjoyed reading your post. We only received a diagnosis for our 10 year old last week, it has taken us from the age of 21 months to get somebody to take us seriously.

    • Thank you – so sorry to hear it has taken so long for your son to be assessed and diagnosed – I hope that knowing he is on the autistic spectrum will give him more understanding and acceptance towards himself as he enters the next phase of his childhood. Best wishes.

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