"Waiting years for a diagnosis"

The reason I am getting in touch with you today is regarding the current waiting list for my son to be assessed for a condition which we have already been told at a pre-assessment he has - Autism.

I have been struggling to manage. The bigger and stronger he gets and during an embarrassing break down in the doctors office a few months agi she placed me on anti depressants to help cope with severe anxiety and depression because of it.

After this I contacted the office of the paediatrician who admitted my son's file had been misplaced. I was shortly sent an assessment date with 2 weeks notice, unfortunately it landed on the one day in 5 years I was out of the country and couldn't do anything to get back on time. I was reassured he would have another before 2017 was finished.

I called again and was told his paediatrician would soon be going on leave and his file would be passed to another.

I called again a month later to be told his paediatrician was on leave and would be seen by a new paediatrician at the end of this year or early next year.

My son has not slept through the night since the day he was born. He has a lot of sleep issues. Recently I realized he was taking seizures in the middle of the night and this was the reason he was always waking around 3am. 

In a panic I made contact and went to the offices of everyone who's ever been involved with his health and asked for help. I am at breaking point and was sympathetically informed by them all that they cannot take any further steps with my son until this assessment is done.

He is dairy, wheat and gluten intolerant as well as having the stereotypical pernickty fussyness that's associated with people who suffer sensory processing disorders. He was meant to have a referral made to a special needs nutritionist at his pre-assessment last year. During my research to try and find help from someone in I discovered that the referral had never been done. Which is upsetting as the Doctors tell me he is overweight and make me feel like it's my fault. 

As I've explained to them he's awake from 6am until 11pm and does not sit down he is constantly hyper, doesn't have dairy or wheat, definitely no processed sugar and lives basically on fruit, free from cereal and bread, and almond milk. What I feed him is not the reason for his weight problems and no one believes me.

You may have picked up on some key words which are normally associated with ADHD. Ourselves and the educational psychologist believe this may be an additional issue my son has along with his Autism, Sensory processing disorder, sleeping problems/seizures and intolerances.

I was told I cant even start the process for a diagnosis and help for ADHD until after his Autism assessment.

I have been saying I suspect he has Autism since he was 18months old. It is a strong gene in my family and all the red flags were apparent since he was only a few months old.

His health visitor told me at the 36month check up that he does not have autism, it is me who needs to learn to discipline. And they referred me to a parenting class. Which was insulting, however I did enjoy the class because the lovely people at Burnbank centre realised the class was patronising and turned it into a respite session for us instead, which was the biggest simplest boost we all could have wished for.

Now bringing you back to present day, and the reason I am now involving you. 

A few months ago I received a call from my health visitor. 

It began with "heard you've been making calls." 

"We already told you everyone that needs to be in place for (son's name) is in place, they don't need to contact you." 

"There are no paediatricians in Lanarkshire available to take (son's name) file therefore he will not be seen until the end of 2018" 

"You need to remember you were offered an appointment which you didn't take."

I have been asking for help for his Autism since 18 months old. He was 3 before he was attending speech and language. He had a pre-assessment at 3 years 10 months for 10 minutes where the paediatrician confidently said he will be diagnosed with Autism it is obvious in him. 

He is now 4 years and 10 months old and being told he will be almost 6 before being diagnosed - and as stated previously no one can help me any further until this diagnosis is in.

My fear is school.

He has been at the same nursery since he was 6 months old and they have been fantastic at caring for him, I can't fault them in any way, however he is a big strong boy and when he is overwhelmed he is aggressive, when he is aggressive he can be a danger to other children.

Myself, the nursery and the educational psychologist agreed he will need a support worker and extra help to transition from nursery to school.

His educational psychologist said we really need the assessment in by March to be able to stand a chance at arranging a classroom support worker for him.

I am facing redundancy in 2018. 

I can't find another job because without a diagnosis and support for him at school I will be in a new job on probationary period and having to constantly take unpaid leave to help him. Which will terminate any new employment.

I can't be unemployed because without a diagnosis I won't receive any carers benefits to support me keep a roof over our heads and food in our bellys.

Mistakes have been made over and over again trying to get my son help, I don't want to get anyone into trouble. I only want what he is entitled to so we can get on with making our lives that tiny bit easier.

I need his Autism assessment, I have been patient long enough. I need his ADHD referral so I can find something to help him sleep so I can finally sleep. I need his diagnosis so he can get the help he's entitled to for school so i can maintain employment and not face unpaid leave and debt.