ASD Pathway

[stressingmum]

Hi All,

Looking for advice, my DS who is 2 and 3 months has many red flags for autism and is non verbal no words at all.

I raised my concerns 3 times in 2021 with HV this was ignored and told to 'wait and see'

By September with no change I booked in with GP who said best thing would be a Paediatrician appointment so a referral was made.

As yet my DS has not had his appointment and is still another 6ish weeks away. I have been told the the current waiting times in Kent where I live is 3 years from the 1st appointment. So technically he will be over 5 and in school by the time he has a potential diagnosis.

I guess the question I am asking is it normal to wait this long? And if it is has anyone explored doing this privately and what kind of cost is involved.

Separate to the Paediatrician, DS has seen a Speech and Language therapist and is on the waiting list for further help.

Sadly, these waiting times and the watchful waiting approach of the HV are common across the country. However, a diagnosis doesn’t necessarily change anything or open doors to a huge amount of support. Support is based on needs rather than diagnosis so DS can receive support now.

Have you applied for an EHCNA?
Have you applied for DLA?
Has DS had an OT assessment? If not, in some areas you can self refer.
Is DS under Portage?
Does DS attend nursery?

If you go private make sure the assessment follows the NICE guidelines. If you use someone who also works in the NHS the validity of the assessment is less likely to be questioned by others. Costs vary greatly.

Thank you so much for the reply, I was lead to believe I can't get any additional help until we have some diagnosis so I will explore what options you have mentioned.

This may seem like a strange question but why would he need OT?

DS has been referred to portage and have that booked in for after Easter.

He does attend a nursery for a couple of sessions a week and has been for about 8 months.

Thank you so much for the reply, I was lead to believe I can't get any additional help until we have some diagnosis so I will explore what options you have mentioned.

This is categorically not true. Many parents think a diagnosis opens the door to support, but it mostly doesn’t as support is based on needs not diagnosis. Many find following diagnosis their DC is promptly discharged.

For DLA look at the Cerebra guide. And for the EHCNA look at IPSEA and SOSSEN.

OTs look at more than what many people realise, e.g. independent skills, self help skills, social skills, sensory difficulties. In some areas the NHS no longer undertake sensory OT assessments, but I believe Kent do. DC with ASD would benefit from OT assessment and provision.

If the nursery need more funding to support DS while you are applying for an EHCP in some areas and some 2 year olds nurseries can apply for early years inclusion funding.