How to get assessed & diagnosis

Hi and welcome to the community.

I'm sorry you're experiencing these difficulties with your GP.

You might find it helpful to refer them to the NICE guidelines, which clearly provide for a diagnostic pathway for children aged under 5:

https://www.nice.org.uk/guidance/cg128/chapter/Recommendations#referring-children-and-young-people-to-the-autism-team

"1.3 Referring children and young people to the autism team

1.3.1. Refer children younger than 3 years to the autism team if there is regression in language or social skills. [2011]

1.3.2 Refer first to a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) children and young people:

• older than 3 years with regression in language
• of any age with regression in motor skills. [2011]

1.3.3 Consider referring children and young people to the autism team if you are concerned about possible autism on the basis of reported or observed features suggesting possible autism (see boxes 2 to 4 in the appendix). Take account of:

• the severity and duration of the features suggesting possible autism
• the extent to which the features suggesting possible autism are present across different settings (for example, home and school)
• the impact of the features suggesting possible autism on the child or young person and on their family
• the level of parental or carer concern and, if appropriate, the concerns of the child or young person
• factors associated with an increased prevalence of autism (see box 1)
• the likelihood of an alternative diagnosis. [2011]

Box 1 Factors associated with an increased prevalence of autism [2017]

• A sibling with autism.
• Birth defects associated with central nervous system malformation and/or dysfunction, including cerebral palsy.
• Gestational age less than 35 weeks.
• Parental schizophrenia-like psychosis or affective disorder.
• Maternal use of sodium valproate in pregnancy.
• A learning (intellectual) disability.
• Attention deficit hyperactivity disorder.
• Neonatal encephalopathy or epileptic encephalopathy, including infantile spasms.
• Chromosomal disorders such as Down's syndrome.
• Genetic disorders such as fragile X.
• Muscular dystrophy.
• Neurofibromatosis.
• Tuberous sclerosis."

NAS96064 said:

I have a 4 old daughter that is clearly severely autistic but have no diagnosis or doctors will not ever refer her until she’s 5. I’m at my wits end with no support from any medical professional. I try not to self diagnose but having autism mildly myself & my teenage son, the signs are there. The severe meltdowns, rocking back and forth , humming, hand flapping, no social boundaries, plus only 2 hours a night sleep. She was supposed to start reception but the school are very hesitant to take her due to her violent outbursts (she is also quite heavy & very tall for her age so could easily hurt another child) they’re trialing her out an hour or so a week to see if she can attend but they also say they can not send any referal until she’s 5.

i know the waiting lists are extremely long so having to wait another 6 months to even be referred is too much to even think about. I barely leave the house due to her meltdowns, survive on zero sleep & am spending ridiculous amounts of money for her needs (things to keep her stimulated & occupied, special foods because she refuses to eat what I buy for the family) without any help. I have applied for DLA but am unsure of the outcome due to no diagnosis or assistance from any doctors. 

Does anyone have any advice on how I can get her assessed any faster? The doctors are adamant they can’t refer her until she’s 5 & are so unhelpful. My surgery is rated 1 star so that says everything. They won’t even see her physically for an appointment & I just have to communicate via econsult. I have numerous videos for evidence of her behaviour but they just don’t want to know. 

I'm really sorry to hear what you're going through. It sounds incredibly challenging, and it's understandable to feel frustrated and overwhelmed.

If there is another sugery near by you could swap? My local autism diagnostic service says for children over 2 1/2 but under 7 they will accept referals from the following people Consultant Paediatrician, Health Visitor, School Nurse, GP, Allied Health Professional, Educational Psychologist, SENCO, Specialist Teacher. Is there any chance you could get one of these. You could maybe push the school to take her then refer her directly? Or arange a private consultation with an educational psycologist?

That said your local diagnostic service may have difrent referal rules.