Getting an assessment

Having been advised that to get a referral to CAMHS I would need input from school or the GP, I went to the GP. I did a ‘brain dump’ of Katie when she was at her best and Katie when she was struggling, wrote it all down and asked him to read it, because I knew if I just tried to explain at an appointment I’d forget things or he’d interrupt to ask questions. Based on what I’d written the GP said they would support a CAMHS referral so I thought that would be it. But he phoned me the next day to say he’d made a mistake and the surgery’s policy was to only refer if they had input from school as well. School observed Katie at my request and told me there was no cause for concern and they wouldn’t support a CAMHS referral.

The Head told me they could put her on the waiting list for the Emotional Health Academy but that the school SENCO lead was on long term sick leave, so the Head would have to do it herself. She was at great pains to tell me that she was really busy so she couldn’t guarantee anything, and the waiting list for the Emotional Health Academy was about a year. The EHA might then support a referral to CAMHS, which had a 2 year waiting list, so basically we’d be looking at about a 3 year wait even to get Katie assessed, at which point she’d be coming up to the end of primary school. I got the distinct impression she thought I was a neurotic hypochondriac who couldn’t control my child and she wanted me to go away. She certainly wasn’t very encouraging.

In the meantime I also got in touch with the autism advisor for our local council who listened to what I had to say and said Katie sounded like a very typical autistic girl, i.e. she was masking successfully at school but it was taking so much energy and effort that when she got home she would go into meltdown (obviously this can apply to boys too but it seems to be more the case with girls).

Given the waiting lists we decided to look into getting Katie assessed privately and found a psychologist at a place that only had a waiting list of a couple of months and who the autism advisor at the council said was a good company to use. They suggested that rather than dive straight into a full on autism assessment they meet Katie and have an initial chat with her so that they could then advise us as to whether they thought she needed the full assessment. I went with Katie for this bit and it was interesting to see her response to some of their questions. One part of it was to look at pictures of different scenarios and tell the psychologist about it.

Picture of a boy leaning against a gate with his shoulders hunched and looking down

Katie – it’s a boy standing in a field

Psychologist – anything else?

Katie – there’s a gate in the field and the boy is leaning on it

Psychologist – how do you think he might be feeling?

Katie – I don’t know

Picture of a mum and dad playing in the background with their baby. A slightly older child is in the foreground looking sad

Katie – there’s a mum and dad with a baby, and the baby has a big brother

There was no mention of the emotion behind the pictures or a guess at the wider context. I didn’t know if this was because Katie wasn’t engaged in the exercise or because she could only understand the literal scene.

She also asked Katie to tell her about her friends, but she didn’t talk about anyone from school or her couple of friends outside of school. She talked about Rose, her friend from preschool who she hadn’t seen in about 2 years at this point, which just made my heart break for her. And she talked about my cousin’s children who we had stayed with on holiday but didn’t see regularly at all. There was a real lack of understanding about friendship, which took me by surprise a bit.

The psychologist’s recommendation was that yes Katie should have a diagnostic assessment for autism.

In the meantime, in spite of school insisting that there was no need for any referrals, I got a call one Friday afternoon when I was at work. It was Katie’s childminder, who said that Katie was refusing to leave school and go home with her. She was crying in the playground and wouldn’t let the childminder near her when I asked her to put the phone to Katie’s ear so I could try talking to her. Her teacher came on the line saying she didn’t know what had happened or why Katie was so upset. In the end the childminder had to leave as she had other children she had to take home with her (including Alice and Matthew) and Katie’s teacher asked me to come to school to get her. By this point Katie had run off to a corner of the playground and pulled her coat on back to front so that the hood was up over her face, and was refusing to move. When I got to school they had managed to bring her back in to the classroom and she was quiet but she was sitting on a chair facing the wall (her choice, she hadn’t been made to sit like that!) and still had her hood up over her face. Again her teacher was really apologetic saying she didn’t know what had happened. I was massively pissed off by this point. This is what I keep trying to explain! She has meltdowns all the time at home. There was probably no massive issue, no argument with a friend, no nasty incident. She’s exhausted by trying to keep it together and probably something that would be insignificant to us has tipped her over the edge. Now do you believe me? You keep telling me there’s nothing going on and yet we’re now at the point where you’ve pulled me out of work to come and do your job for you. If there’s nothing wrong here you should have been able to calm Katie down yourselves! I went and sat with Katie and gave her a tight hug and let her cry for a few minutes. Then I gave her my car keys and told her to concentrate on them, how they felt in her hands, the noise they made. After about 10 minutes she was ready to leave school and come home with me. Off we went with her teacher promising that she would arrange an appointment for me to come and speak to the Head and see what could be done, which was swiftly arranged for the next week. It made me feel really frustrated that I’d been bashing my head against a brick wall for the last 6 months with school and basically being made to feel that I was making it all up, but as soon as they saw something ‘not normal’ for themselves, something that actually affected them, they were suddenly willing to engage.

I was feeling pretty optimistic that we had agreed with the psychologist that we’d get an assessment underway, and I had an appointment with school to actually talk things through. But this was March 2020 so then Covid-19 arrived, everything was cancelled, and we went into lockdown.

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