Published on 12, July, 2020
Hi
We are looking for further advice. We've been on the MDA waiting list 4 years. Finally got through assessment with 12 year old son.
He was assessed using DSM 5. The outcome is A1- Psych & SALT agree but school don't. A2 - Psych & SALT agree but school don't. A3 - All agree.
B1 & B2 - all agree, B3 - Psych & SALT agree but school don't. B4 - all agree.
So A1, A2 & B3 would have been successful as Psych & SALT agreed it was clear in assessment but because school who have known him 7 weeks at point of MDA, disagree we don't get diagnosis. The psych said Asperger's when verbally feeding back but said they have to be careful if school don't agree, as the school could challenge the diagnosis. How in God's name is this right? Medical professionals agree but an outdated school SENCO who has known him 7 weeks can have so much influence?
Where can we go next? Can't believe school's can control so much.
We have had to de-register him from the Education system anyway, as there were a couple of safeguarding issues that the school fobbed off. We couldn't let the school systems do anymore damage, so we de-registered before we got the results of assessment. So he has been officially home educated since January.
I'm hoping someone can please help us through this. My son has been failed by the Education system and now the Health system.
Any words of advice please?
Thank you I will give the helpline a ring and find out more details. We had a difficult time doing local MDA assessments due to his anxiety. So further afield will be very problematic. However we would travel to the moon and back to get him the support he needs. Very tired of the fight though.
Hello. I don't know which area you live in but the NAS have their own diagnostic service.. I'm sure the help line number would be able to help you with that.
Just to update everyone and thank those who replied. We discussed the details with GP and he has agreed we need a second opinion out of area. No idea where to look for an out of area referral? Some areas are better than others at recognising from what I have read but I need to inform GP where we would like referral made to. Is there such thing as a directory/map showing who we may consider?
Hi RedSquirrel,
You may like to contact our Autism Helpline team who can provide you with information and advice. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.
Please see the following link for further information:
http://www.autism.org.uk/services/helplines/main.aspx
Regards,
Kerri-Mod
It sounds like your having a really tough time. Could you save up and get an assessment privately? I've found that having the right label (ASD) has transformed my life.
I have no words of advice but would like to hopefully give you some hope. My son has finally been diagnosed with Aspergers (aged 13) after 3 Autism assessments! A little like you school disagreed with the behaviours I was mentioning to the Autism professionals so he didn't get his diagnosis. I have learnt through this battle that sometimes Autistic children can just about manage through their day at school but as soon as they are home in their safe environment their true behaviours come out. As I say I have had to battle for my son and this has been ongoing for years. You as a parent know your child better than anyone so if you truly feel he needs another assessment then I would suggest you request another one. This is what I unfortunately had to do and the third time my son was assessed the CAMHS professional even said to me 'my god, how has he been coping'!!!!! This broke my heart to know my son had been let down so badly over the years, not to mention the impact it had on us all as a family.
Stay strong and fight for your child. Good luck.