Autism diagnosis journey #2

Journey #1 was underway but hitting obstacle after obstacle when it became clear that G also needed support, but in a very different way to J.

G had a trauma in her young life which brought many of her difficulties to light and also led me to engage with all the support services going in the local area, and then again when we moved to a new area.

Unlike with J, G's difficulties are easier to see from the outside and more 'typical' of autism in girls.

G went to two primary schools, having to move abruptly following her young trauma and finding it incredibly difficult to change to the second school she needed 1:1 support immediately and her teacher realised this without me having to say anything which was refreshing.

However, it was so distressing to ave to drag her into school everyday we made the decision to stop putting her through it and deregistered her. She is now home educated too. If I had known that home education was a legal and valid alternative way to educate your children I would have never sent any of them to school. School can be brilliant for some children, can be the making of them, but for others who are bullied, slip through the net, learn differently or are extremely anxious it is a living nightmare.

I took G to see our local GP with a diary of my concerns and asked for a referral to CAMHS (child and adolescent mental health services). The referral bounced back so I referred her again myself after finding a copy of the referral form online. I decided to bombard them with paperwork and evidence so they gave her an initial appointment. Ironically it came through as two days after J's initial appointment after all the fighting and arguing (they call this advocating for your child but it feels more like going 10 rounds with Anthony Joshua).

The mental health nurse said we would have a long wait to be seen, but I knew that already.

In the meantime it was becoming more apparent that A was also displaying symptoms and difficulties similar to J, so journey #3 was about to begin.

I didn't know which way was up anymore. I decided I needed to try and help one child at a time.

Whilst J was waiting for CAMHS to see him after his diagnosis I took G to see a private occupational therapist for a sensory assessment. They picked up on a multitude of issues I had never even considered, but which instantly made sense.

With the sensory processing difficulties G was coping with fresh in my mind I started to think about J, so booked him in for a private occupational therapy assessment too.

Meanwhile G had an appointment through with CAMHS thanks to a new ruling which was designed to cut waiting times. She was assessed in a tiny white windowless room, in a long corridor reminiscent of a ferry. There were two women she had never met before, a table, and a chair for her. I wasn't meant to stay but there was no way I could leave her. She curled up in a ball on the chair and shut down entirely.

She was diagnosed following the assessment with high functioning autism (they don't call it Asperger's anymore), anxiety and selective mutism with signs of post traumatic stress disorder.

The NHS occupational therapist saw her and discharged her after one appointment because they can't do a sensory needs assessment.

The NHS speech and language therapists saw her and discharged her after one appointment because she can physically produce the sounds for speech.

There is no help for her. No support to help her through her problems. She self harms, has dark intrusive thoughts, struggles with depressive episodes and pain. She is only 9 years old.

The NHS could offer her six sessions of counselling but it would take her that long to be able to trust someone enough to speak to them. She has been through similar with Mind. They offered her sessions with a lady who promised her she could go back if she felt low again, but then the lady left. Services are not good enough and my heart breaks for her.

#Autism #SelectiveMutism #SM #Aspergers #PTSD #anxiety #CAMHS #mentalhealth

Telling our children they have autism

At eleven, our son was pretty aware of why we drove the four hours to see a team of professionals, and so I explained to him beforehand that we were going to see them for an assessment, which meant he would have to do some games and online puzzles whilst I talked to some people in the other room. 

It was tough because I didn't really know what to expect either, so I couldn't answer many of his questions about the team, or day, but he understood that it was all for a positive reason and that, regardless of the outcome of the day's assessment, it didn't change anything and we still love him the same.

We had sat down together as a family a week or so before the appointment, and i had introduced the idea that there is a rainbow with fluffy white clouds that some people call autism. I explained to all three of my children that lots of people are somewhere on the rainbow or clouds (my son would not appreciate being on a rainbow, hence the fluffy clouds), and that makes them special, as their brains work in different ways to people who aren't on the rainbow and clouds. I introduced the words autism, demand avoidance and anxiety lightly and told them that me and their daddy thought that they were probably all on the rainbow and clouds, and that we both suspect we would be too, but when we were younger people didn't think of it like we do now.

They all accepted this introduction well, and it seemed to make sense to our eldest two, even though we had said we couldn't say they definitely had autism without a team of doctors assessing them first. 

The team we went to for our son's assessment, and our youngest daughter's assessment are a four hour drive away from home, so required an overnight hotel stay before the assessment. This provided me with the perfect opportunity, away from the normal distractions at home, to explain the next day and possible outcomes to them in age appropriate ways. 

Our eldest daughter was assessed by the ASD assessment team in our local CAMHS, so her assessment was spread over a few visits. She has far higher visible anxiety than my other two children and found the assessment process far more difficult than they did, possibly because of the environment being relatively clinical, the time between visits being prolonged and not knowing exactly what and who to expect. But then I suspect she would have reacted the same to the private assessment team also, and was concerned that she would not be able to be assessed by them in one day if she did have this reaction there. 

Our eldest said that the diagnosis made sense to him. I read Ruth Fidler's books to him about PDA and sensory processing disorder (available and more information here: https://www.amazon.co.uk/dp/B00QQWRY8C/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1). I shortened both and then left them for him to read himself when he wanted to. 

Initially he accepted the diagnosis and seemed to find it a relief that lots of his struggles were in the books I left for him to read. Then he went through a period of being annoyed that he had autism, wanting to be 'normal' and he said once that he wished he had nothing wrong with him. I have done work with him and used younger minds and online psychology sessions to try and boost his self esteem and understanding that having autism is not a negative. Unfortunately he has had some additional things to deal with since then which have had a profoundly negative effect on his mental health, but we are working on this together as best we can.

Our eldest daughter was amazing. She was happy- big, smiley happy- when i told her her diagnosis. She instantly said that she was relieved that she isn't just weird. She has said to me for some time that she feels she is different to other children and wants to make friends but can't. These were some of the main reasons we decided to go through ASD assessment for her, knowing how hard she would find the process. I felt it was important to be able to tell her that she is not weird, or different to others in any negative way, and to be able to support her in the right way, using the correct strategies. She is comfortable with the diagnosis and words around it, and we will be working together to help her understand herself better and her anxieties and feelings in time.

Our youngest is only five years old, and so I have told her she is on the rainbow and that means she has autism. I have also told her that some of the things she has problems with, like sharing toys, playing with other children, feeling angry and not being able to say it but only scream, needing ear defenders and other things, is because she has autism and PDA. I don;t think she understands it, other than knowing her big brother and sister also have autism. It is something we will work on together as she gets older, but until then we will try our best to help her, and he siblings to all manage and recognize their emotions and anxieties better.

As a mum, I have honestly found, an am still finding, their diagnoses hard to hear and take. 

I referred each of them for assessments because I strongly suspected that they had autism and PDA. In my heart I knew that each of them thought differently and had different strengths and already knew they had autism before each of their assessments. However, and I cannot stress this enough, knowing it yourself does not make it any easier to hear when it is categorically confirmed as a medical diagnosis. To sit there and hear a professional who has really taken the time to understand your child tell you about your own child is hard. So so hard. I am still awaiting two of their diagnostic reports, but the one I have for my son is around forty pages long in all and makes for tough reading. 

I found it nothing short of miraculous that, after only a few hours together, they had understood my son's struggles and difficulties, as well as his strengths. Hearing how many of the small aspects of his daily life they had picked up on, along with possible strategies and signposting towards help and support for him made me feel more confident in their diagnosis than any research beforehand had done.

They did exactly the same with my youngest daughter. The team had picked up on how bright she is from their testing, seen her strategies for ignoring and avoiding demands, seen how well she manipulates conversations and avoids topics she doesn't want to engage in. They answered how my son often walks in front of people without realising it, why he leans on everything, why my daughter can't sit and eat with us at meal times.....I could go on and on but basically, getting the diagnosis is hard and heartbreaking, but worth it for all concerned.