When I broke the news on my social media that my child had just been diagnosed with autism spectrum disorder I had a mixture of comments. Some people were sympathetic, others shocked, and others commented along the lines of ‘this should help you get him all the help and support now.’
It is incredibly common to hear that. But it is a myth.
Both of my children were diagnosed with autism and then dumped.
Having a diagnosis has not enabled them to get the support they need.
Even with a diagnosis my non verbal son still can’t access NHS speech therapy.
Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self care such as dressing themselves.
In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.
They have been discharged by educational psychologists claiming there is no need for ongoing support.
Despite being diagnosed their educational support plans are continually threatened with closure.
Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.
On the actual day of diagnosis we were handed and leaflet and sent on our way. This is happening to so many thousands of others and it needs to stop. Families are emotionally vulnerable, confused, desperate for support and looking for hope. One leaflet is not ok.
My children had more professional support BEFORE they were diagnosed than they have had after!
Before they were diagnosed we had an abundance of meetings, successful claims for dla with huge backing from every professional we came into contact with, access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support. We had six monthly paediatrician clinics and referrals to any other services we needed.
After diagnosis everyone seemed keen to discharge us.
We were diagnosed and just dumped.
We are not alone.
The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.
No wonder so many autism families feel let down and despondent.
We were build up and emotionally prepared for diagnosis only to be ignored afterwards.
Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.
Only then can we perhaps stop this awful policy of diagnosis children and dumping them.
This article first appeared here