Pathological demand avoidance

Hi Stilllearning

Schools, teachers and health professionals are the ones who severly delay our children getting a diagnosis or the right support. This is because of our childrens great ability to mask at school.

I'd love to be able to tell you I've been supported but sadly it's been a nightmare and further damaged my son and my health! I had my lightbulb moment back in 2008 when no-one knew about PDA literally! I'd had to put up with "he's not like that at school" = "have you thought about a parenting course" and years of getting agencies in the schools, assessment after assessment only for them to keep going on about my sons distruptive naughty behaviour!

No-one and I mean no-one believed me for 8 years and blamed my depression.

My son could only mask for a certain length of time before his symptoms stared getting worse and showing at school.

No-one listened to me when I mentioned his obsessions and rituals - his meltdowns at home which lasted until bedtime, and everything else that comes with PDA!

The school thought it was acceptable that M threw himself on the floor and rolled around refusing to get up - Thee'd drag him out when he hid under tables (daily) and drag him around by his arm in PE.

It got to a stage when he couldn't stay in class so he would walk out - but was scolded for it daily.

He's been to 4 primary schools - because he was full of tics and controlling!

Eventally I removed him on the grounds that school was detrimental to his health - I had to insist that the dozy senco start a process for an EHCP as no-body was doing anything - and I mean no-one seem to give a stuff that my son couldn't stay in class, was full of tics - it wasn't until he started self harming that they admitted there may be a problem - but still I had no support or help - I HAD TO INSIST ON EVERYTHING!

CAHMS have been a complete waste of space - they dismissed my son 5 times over the years - even when he was reffered by the crisis team! If they know it may be conected with an autistic spectrum disorder they don't help you!

Eventally after 9 years of fighting and him being damaged I removed him - he lost 9 months of education because he didn't tick the box for any home help.

I now have my son in a special school which is better but not ideal.

Hertfordshire county have no provision for autism/high finctioning autism.

The environment is more holistic and they work to his needs - but he still has many communication issues, and other deficits regarding time and space - can't organise himself or go out! His anxiety is severe! But he's happier, his tics have gone and he appears "normal" I hate that, because my son's normal is normal for him - but when he's not anxious you wouldn't know anything is wrong with him - and this is where the biggest problem lies!

Where do you live? I live in Buntingford, Herts xx

Hi Stilllearning

Schools, teachers and health professionals are the ones who severly delay our children getting a diagnosis or the right support. This is because of our childrens great ability to mask at school.

I'd love to be able to tell you I've been supported but sadly it's been a nightmare and further damaged my son and my health! I had my lightbulb moment back in 2008 when no-one knew about PDA literally! I'd had to put up with "he's not like that at school" = "have you thought about a parenting course" and years of getting agencies in the schools, assessment after assessment only for them to keep going on about my sons distruptive naughty behaviour!

No-one and I mean no-one believed me for 8 years and blamed my depression.

My son could only mask for a certain length of time before his symptoms stared getting worse and showing at school.

No-one listened to me when I mentioned his obsessions and rituals - his meltdowns at home which lasted until bedtime, and everything else that comes with PDA!

The school thought it was acceptable that M threw himself on the floor and rolled around refusing to get up - Thee'd drag him out when he hid under tables (daily) and drag him around by his arm in PE.

It got to a stage when he couldn't stay in class so he would walk out - but was scolded for it daily.

He's been to 4 primary schools - because he was full of tics and controlling!

Eventally I removed him on the grounds that school was detrimental to his health - I had to insist that the dozy senco start a process for an EHCP as no-body was doing anything - and I mean no-one seem to give a stuff that my son couldn't stay in class, was full of tics - it wasn't until he started self harming that they admitted there may be a problem - but still I had no support or help - I HAD TO INSIST ON EVERYTHING!

CAHMS have been a complete waste of space - they dismissed my son 5 times over the years - even when he was reffered by the crisis team! If they know it may be conected with an autistic spectrum disorder they don't help you!

Eventally after 9 years of fighting and him being damaged I removed him - he lost 9 months of education because he didn't tick the box for any home help.

I now have my son in a special school which is better but not ideal.

Hertfordshire county have no provision for autism/high finctioning autism.

The environment is more holistic and they work to his needs - but he still has many communication issues, and other deficits regarding time and space - can't organise himself or go out! His anxiety is severe! But he's happier, his tics have gone and he appears "normal" I hate that, because my son's normal is normal for him - but when he's not anxious you wouldn't know anything is wrong with him - and this is where the biggest problem lies!

Where do you live? I live in Buntingford, Herts xx