This is the second part of the story I started to write about a few weeks ago about our family’s journey with Aspergers and Visual Impairment. The first part of the story can be found here.
It was when B was in year 1 at school, aged 6 that I finally decided I needed to raise my concerns with someone outside the family. The trouble was I didn’t really know where to start. Should I go to our GP (family doctor)? Well he wasn’t ill! What would I say: His behaviour is a bit odd, he sometimes pulls things away from other children, he won’t share, he doesn’t look at people when they speak to him or when he speaks to them, he jumps up and down ALL the time, he likes trains a lot and needs to know absolutely every detail of a plan, including what time things are happening and can get very upset if things change or don’t happen at exactly the planned time. Well, I thought, if I go and say all that to a doctor, who doesn’t live with B and may only see him in a consulting room for 5 minutes, I am not going to get very far. My fear and expectation was that I would be told ‘all children behave like that’, ‘he is visually impaired, so he might not be able to see to look at people’ or ‘well he’s just a clever little boy isn’t he?’ The other thing was that I didn’t actually want to take B to a doctor. I didn’t want him to think there was anything ‘wrong’ with him.
So if I wan’t going to share it with our doctor, where else was there. The answer for me was school. I had been pretty unimpressed with the support we received from school in B’s first year. He, on the whole, had been fine. My views were influenced by a teacher who was very defensive and just seemed to regard B as the problem without considering there could be other influences. However, when he moved into his 2nd year of school (year 1) the class teachers changed and B got the teacher he had in nursery, who was much more supportive. B had been struggling with writing and one of the things his new teacher did was to notice that he was left handed, so she started to give the children who were left handed copy sheets with the words to be copied printed down the right hand side of the paper instead of the left. This meant that the children could see them as they were writing. This simple, and quite thoughtful, act completely threw B. One morning the teacher called me over to show me his writing. He was using the sheets and trying to write the words backwards! She had never seen anything like it before.
The backwards writing and the support of this teacher were the key to making the decision to share our concerns and to share them with school. So, it was, that I sat down one parents evening in January 2007 to discuss B’s progress, I broached the subject that I was concerned that B may be experiencing other challenges in addition to his visual impairment. I knew it needed to be done, but it was so hard. What do you say; ‘yes I agree, he’s doing really well with reading and maths, but I think he might have aspergers’. I was also scared because I had worked up to this for a few weeks, I had no idea what I was going to do if the teacher dismissed me as ‘a neurotic parent’. I can’t remember exactly what I said, but I guess the conversation moved around issues such as the backwards writing and B’s thirst for choosing factual reading books rather than fiction and that because he was quite good at reading the words, often the factual books aimed at his level of reading were beyond him in terms of understanding. As we discussed these issues I think I must have made the suggestion that I had a concern that there may be something else other than his visual impairment. As far as I remember, I think I even told the teacher that I thought he might have aspergers.
To my relief, she didn’t dismiss me or shrug it off, she actually agreed with me. When I say agree, I mean she agreed there may well be something else causing him challenges, she did explain that she couldn’t comment re. aspergers. I wouldn’t have expected her to do that!
So, first hurdle achieved. – Teacher agrees we need to look further. So what next?
The teacher spoke to the school’s special needs co-ordinator (SENCO) and he agreed to meet me to discuss where we go with the concerns, great, I thought, people are listening. So I went off to meet with the SENCO, feeling quite positive that we were now on a road to getting some answers, which in turn would lead to some better support. – With hindsight I realise how naive I was!
I met with the SENCO, who didn’t welcome my suggestions with quite such openness. It felt to me as though my concerns were being treated as some sort of criticism of the school and / or an over-reaction on my part. Eventually, and rather reluctantly, the school agreed to speak to a team in the Local Education Authority called the Learning, Language and Behaviour (LLB) team. So off I went, now feeling slightly deflated, as though I was making a fuss and began to question whether, perhaps I was over-reacting.
With hindsight I can look back and know that I wasn’t over-reacting and that I did the right things. I also think this is part of my reason for writing. It is so easy in those situations for the casual remarks of professionals to totally undermine the confused feelings of parents.
So, the LLB team were asked to come along and ‘assess’ my Son. What does that mean? Well, I asked that question and was not much wiser after the answer. Someone came into school, I think it was a speech and language therapist, but I don’t know that for sure. The assessment was carried out in school time without any input from me. When the process was complete I was invited to come and discuss ‘The Report’ with the lady who carried out the assessment. So off I went expecting some answers and ideas for support. Yet again – how Naive was I! I was presented with the findings of the assessment, which were basically that ‘B has some slight communication behaviour issues, but there are children who have much bigger issues than him’. I was stunned. I knew there were children with much more complex issues than B, but I wasn’t asking for their assessments and just because there were many other children with higher levels of need didn’t mean that my Son didn’t have a need. She then went on to explain some of the detail of the report which identified that he had problems with accepting that others have equally valid points of view to his own, that he didn’t share very well, that he didn’t look at people etc. All this was stuff I already knew. So, I asked, what do we do about it – how do we help him? She just looked at me and said again that his needs weren’t that great compared with others. In other words, he wasn’t going to get any help.
At this point I felt so demoralised. I had invested quite a lot of emotion into this process and had built up my expectations of getting some answers and after two months of assessments etc. at school we were back to square one. The only useful thing to come out of that assessment process was that at the last meeting the school SENCO told me that if we wanted to get B assessed for aspergers we would need to get a referral to CAMHS (Child and Adolescent Mental Health Service) and to do this we would need to see the GP.
So, after all that I was going to have to go the doctor!
I suppose, I must have known that it would come to this. Luckily for us, we have a fantastic family doctor, who is a bit of a local lead on Paediatric issues and had been a positive support to me when B was a baby. He hadn’t been one of the ‘why did you have children?’ or ‘can you look after them?’ brigade.
During the few months since we made the decision to approach school with our concerns I had started to write down my feelings and descriptions of B’s behaviour. I had kept copies of the backwards writing his teacher showed me and copied any school reports that graded him as ‘below average’ in terms of social skills. I had done this, partly because it made feel better, but also because I felt I had to justify my concerns. At that time it definitely felt more like having to justify the reasons for my thoughts and feelings rather than actually providing evidence that my Son might be experiencing some additional challenges. This sounds awful, but that’s how it felt as a parent with concerns every appointment or assessment or meeting we went to felt like we had to ‘prove’ something.
When I went to the doctors armed with my folder full of evidence I wasn’t sure if he would want to see B or not. As I said, we didn’t really want B to know that we had these concerns and I didn’t want to discuss the apparently negative aspects of his behaviour in front of him. So, it was a major family co-ordinated operation. D had to come home early from work to look after M and my mum came round to come with B and I to the doctor’s so that she could sit in the waiting room with B in case the doctor needed to see him. Most people think that going to the doctor is such a simple event!
As it happened the doctor didn’t want to see B at all, he didn’t even (much to my disappointment at the time) want to look at my mass of evidence. He just listened to my description and concerns and my possible theory as to the reasons and very calmly agreed with me. He told me he had a good contact who was a paediatrician and would refer B straight away. So, we were on ‘the up’ again. Another person believed me, I wasn’t being neurotic, we were back on course. – but not quite! – up until then everyone had told me that CAMHS was the way to go to get an assessment for aspergers, but my GP was telling me something different, slight confusion, but at least he believed me.
Several weeks went by and I heard nothing, so I contacted the doctor’s surgery and was eventually told that B had been referred to CAMHS, – Oops! – so my doctor wasn’t quite as sure as I had first thought he was, but at least we were going somewhere.
CAMHS, for us, was quite a pain free process. Yes, there were loads of forms to fill in at the beginning, but they listened and they read my epic documents detailing all my observations of B’s development, they looked at his school reports and at the backwards writing examples, and in the September after we first raised the concerns they asked me to take B along for an assessment. For us, one of the good things about the process was that B only had to attend one clinic appointment. Another assessment was carried out in school, but he was barely aware of that.
For those few weeks I was on some kind of emotional high. I know this sounds odd, but at that time I felt that everything was going well. This is what I wanted, we were going to get answers, I had provided the evidence, negotiated the systems and got us to that point. I could do anything! For me it was a case of waiting for the results of the assessment to prove I was right, to justify my causes for concern. It would answer the questions and prove that B was not ‘naughty’ (I hate that word at the best of times!) and ‘unsocial’. We would finally get some answers and be able to move forward. I know, at that point I would have been very disappointed if we were not given a diagnosis.
Six weeks or so later, the week of his 7th birthday, I went back, with my Mum, to hear the results of the assessment and discuss the report. It felt like going to find out the results of an exam. Had we passed or not? The answer was ‘Yes’. Well, ‘yes’ in the sense that we were told that in the opinion of the people who carried out the assessment, a child psychiatrist, a child psychologist and a speech and language therapist, B demonstrated a range of symptoms and behaviour that was consistent with a diagnosis of ‘High Functioning Autism’.
Presented with this conclusion I didn’t know what to do. There we were, this is what the last few months had been about, but what next? How did I feel about it? Well I wasn’t at all prepared for what next or for the feelings I had. I had only worked as far ahead as getting to that point. I’m just glad my mum was with me on that day.
I will talk more in the future about my feelings and the process beyond diagnosis as these in themselves are complex issues that I need to unpack and write down.
I do hope that someone may get something useful out of my writing, but it has helped me in a rather self-indulgent way, to write it all down several years after the event. It is only by writing it down that I can start to let myself feel OK about the decisions we made and the feelings I had (and sometimes still have).
Thanks for reading