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

Autism diagnosis journey #1

Journey #1 began when J was 3 years old. As his mum I knew he was full of energy, strong minded, independent and very hard work so I sought out professional opinions and help for him.

But...

Instead of help I got a single parent family worker who came to the house with reams of paperwork, telling me how to parent my child. When she saw that it wasn't working she said there was nothing else she could offer.

Next, surrounded by people confirming the issue must be with my parenting rather than anything else, I completed a parenting course. I had already tried all of the ideas and strategies they suggested, but when I pointed this out to the course facilitator, she said there was nothing else she could do.

Then he started in year 1 of infant school. I had such a battle every morning getting him there safely, then dreaded the afternoons when all the parents gathered under the small roofed area, waiting for their children to come bouncing out of school with drawings and smiles. I was always the one who the teacher needed a minute with. Always in teacher speak he had been full of energy, overly eager, the leader etc. He would scream, kick, cry and shout every day on the way home. It was a mile walk home every day like this.

Next, I approached his teacher, the SENCO (special educational needs coordinator) with my concerns. She sent me to the headteacher.

I demanded a referral to CAMHS (child and adolescent mental health services) for some help for my son at this point.

The paediatrician called us into his room after months of waiting for an appointment. I had read the riot act to my son before the appointment, told him to please behave and then we could go to the park afterwards. We went into the room, both sat on the clinic chairs and I confirmed the essential details to identify us as the correct child and problem parent. He then told me that because my son had sat on the chair for the whole five minutes it had taken to confirm that, there was nothing wrong and he discharged us. The end.

Honestly, surrounded by people who also thought and said it was all down to my parenting I accepted it. Deep down I knew they were wrong but what else could I do? We never made it as far as CAMHS, the school SENCO didn't think there was anything he needed help with, so it must be me.

This went on for years, with him going to three primary school in total, finally being taken out of school and home educated after he was bullied and the school did nothing to address it.

By chance, we ended up moving to another county, where there was far more awareness of special needs, disability and mental health, and by now journey #2 had begun so I was more aware of our rights and the people I needed to fight against to get support for my children.

The move was obviously a huge change and it brought to light a large number of triggers, behaviours and difficulties in my children. Diaries were kept, notebooks filled, appointment made and referrals sent in triplicate until finally CAMHS agreed to see him. By now J was 11 years old.

We had the initial appointment where they checked the essential details again, talked about parenting styles, to which I immediately stated I knew it was not due to my parenting and was told the wait for an assessment was around 18months. There was no way he would have still been living with us as a part of our family if we had waited that long so I sought out an assessment team in Norwich and took him over there for a private assessment. Lo and behold he has autism. He actually has a part of the autism spectrum called PDA (pathological demand avoidance). The moment the team told me they could see his difficulties and knew how to help I cried. I had done a lot of research by that time into different possibilities of what might be happening for him, but to hear someone else say it as a confirmation was still a shock and a relief all at once.

I took this diagnosis back to my GP and local CAMHS and demanded he be seen by a psychiatrist. It took a further eight months of arguing with them that he needed the support and help for him to get that appointment where he was able to discuss treatment options. He was 12 years old.

Nine years of fighting the system.

Nine years of being told it was all down to bad parenting.

Nine years of meltdowns, bullying, terrible education experiences, no support.

Nine years of dragging this poor anxious, autistic, overwhelmed child through needless hoops of counselling, group therapy and appointments with people who didn't or couldn't listen to us.

Finally he decided to try medication to help him sleep and reduce his anxiety with a view to reaching a point where he would be able to seek talking therapy to manage his anxiety further.

Now that we understand what he has, we can understand how to help him through every day. Now we have a diagnosis for him, we can ensure he has the appropriate support in every situation.

He now follows his own interests and we cultivate them through providing extra opportunities for him to flourish and expand his interests. We focus on his emotional well being and every day living skills and repairing the damage that has been done in these years of being sent away by professionals who were lacking in their professionalism and knowledge.

He suffered with autism, PDA and sensory processing difficulties for 12 years before anyone listened to us and helped him.

He still looks like any other child without additional needs, so people expect far too much from him and project their own lack of understanding and ignorance onto him. This is his biggest battle everyday and something we are trying to change.

When you have that little baby and you promise to love them and always be there for them, you know them better than anyone else in the world. As they grow and develop that doesn't change. No one will have written a book about your child, no text book or lecture will ever be about your individual child. No matter how many times others tell you different, do not give up if you know your child needs help. Keep going until you find someone who can listen and educate yourself on your rights.

#Autism #PDA #CAMHS #Parenting