"Autism and additional support needs"

We as a family feel totally let down by all services involved. My 10 year old  has been displaying extreme distressed behaviours which have affected the whole family including his 8 year old sibling. After being let down on several occasions by health and education I took matters into my own hands to attempt to get help. The GP agreed to a referral to the Neuro development team for formal autism diagnosis, but we feel that we have been left to struggle in limbo.

My son started to display distressed behaviour when he was just 7 years old. Whilst I understand that COVID has had an impact on all services I feel that it should not be this difficult to receive help and support for my son who displays aggressive and self-harming behaviours alongside him voicing the wish to die - no mother wants to hear their child say this. I feel that if an adult was displaying the same behaviour they would receive the help and support they deserve. The waiting time is ridiculous and I feel that referrals should be screened appropriately rather than just working down the list. We saw a consultant and thought the process for diagnosis was finally starting only to find it was a waste of time for both me and my son who really struggled with attending the appointment in the first place. The consultant was very much negative in that I was being told that there is at least another 2000 people in front of us to be seen, I still don't actually know what the reason for that appointment was, if it wasn't to start the ball rolling on the diagnosis process, my son had a huge meltdown afterwards and again voiced his wish to die.

I feel extremely frustrated at the whole process and when seeking help I am met with brick wall after brick wall. The staff member from occupational therapy was also extremely unprofessional and rude when I was signposted to them from the ND team, after telling them on numerous occasions that I was at the school gate collecting my children and therefore cannot give a history they proceeded to try and ask anyway, refused to call me back and insisted that I take their number instead (which I could not do as I was at the school gates). Also snapped at me because apparently the ND team should be using their own therapists and not the general OT's, again highly unprofessional the way I was spoken to me, this is a matter to be discussed with professionals not a mother who is trying her best to get the help and support that we are entitled to.  

At the end of the day we are a family who are trying their best to understand a 10 year old  who is struggling big time with their own mental state and sensory issues and to be honest we do not have a clue what we are doing as his parents as we feel out of our depth, I seriously worry about his future and his mental health and I pray that I don't walk into his room one day to him attempting to take his life or seriously hurt himself. Children's mental health and wellbeing  should be a priority in healthcare but its blatantly obvious that in this case the care is lacking for the impact this is having on my son and his family, we are at breaking point and have been for a very long time now but no one seems to care.

He is 10 and is very aware of how different he is to his peers and will be starting high school next year, he will also be hitting puberty very soon and I fear that his behaviors will only get worse and more intense the longer we wait on diagnosis. I feel the NHS need to start looking at how they can seriously improve services to children - a 3 year wait is totally unacceptable for any family. I am absolutely exhausted with trying to fight the school for support and also try and learn all about autism and PDA whilst having dyslexia myself.

Professionals tell me all the time that we can get support without a diagnosis but I would like someone to explain to me how to do this as so far I have been met with obstacle after obstacle. I could also be making things 10 times worse by using techniques for something when it may not be effective. It's ridiculous. Again NHS you need to sort yourselves out when it comes to our children's mental health and wellbeing, these children are the future and your causing unnecessary damage to them by not investing in the correct services or offering support to families who need that support. Signposting to 3rd party organisations is not good enough. Diagnosis may not be important to services but it is to families who are actively trying their best to make things better at home for their children who are suffering, PDA strategies are totally different from Autism strategies and therefore need a diagnosis so that I know I am on the correct path and not making a situation worse.