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Getting a diagnosis for my son any advice??

NAS89419

Hi everyone I’m new here! I am currently in my third year of nursing. I have worked with children with autism in residential settings and have a lot of experience in this field - from a social worker perspective.

I have a 3 and a half year old son… he has currently been seen by community pediatricians, speech and language, SOGS and his health visitor - all of which agree his development and mind is that of an 18 month old including cognitive skills.

he has a huge obsession with buses, VERY repetitive behaviour physically and verbally, he does not like foods which have sauce - so his diet is difficult - pasta, chicken nuggets - anything dry which he will eat.. it’s so difficult to get him to eat anything different. He stims, gets very distressed if routines are broken, lines up toys, is a lone player, doesn’t like the feel of things on his hands, covers his ears and rocks when distressed  and much more - I could go on!.

anyway, in order to get his diagnosis - they have said they need a referral from an educational setting I told them I didn’t feel he was ready for nursery and low and behold I was right. He started over a month ago and every morning is meltdowns trying to get him out the door, we have tears, crying, screaming, repeated body language and verbalising things repeatedly… my concern is it is also affecting him on his days off and at night he’s become even more anxious as soon as we go to take my daughter to school he will have a meltdown and say “no school, not today, no tommy” etc aswell as waking with night terrors and all sorts (waking in the night has been on going for a long time however it’s become worse since nursery started).

my question is - how long does it take to get a diagnosis and is there anything I can do to help him see school (nursery) as a safe place and ok?. Or do I pull him out and maybe take the private treatments route?. Despite working with children with autism and my nursing training - I feel very novice when it comes to my own child because all I want is what is best for him emotionally, for his development and educationally. He struggles socially and to make friends… I just want him to be happy and relaxed more so like before he went to nursery. Any advice would be amazing. 

  • Side note- never met one educated in that area health visitor or midwife but my kids are grown so hopefully newer ones are better trained! 

  • I personally think if you can afford a private assessment do it, a lot of children learn to mask traits and they can go ‘under the radar’ extremely easier in the education system ( speaking as a parent, educational healthcare professional and autistic adult), I have an adult child awaiting currently over 3 years for an assessment, everyone’s different but I know my life would have been a lot easier with the appropriate support and awaiting for my child to be seen by a professional, I would have also picked up on ‘traits’ which I didn’t being unrecognised as neurodiverse myself, it may also rule out/ diagnose any other conditions that could help him and yourself gain support with/ knowledge, only one persons opinion though so do hope I have not offended anybody 

  • Have you contacted your Health Visitor? I believe they can make referrals. I don't know if they need to have additional training in ASC assessment tools.

  • As far as I know, a GP can refer a young child for autism assessment independent of any educational intervention, so I would challenge that assertion. Your child is too young for mandatory schooling anyway, and whether or not you put him in any form of pre-school should be your decision.

    Any form of school setting can be profoundly distressing for an autistic child. When I started infant school (no previous nursery/preschool) at four and a half, I was selectively mute for 3 months - though I was always very chatty at home.

    The private assessment route might be useful and much quicker, but it is expensive.

  • I don’t have any advice unfortunately in diagnosis for young children, I’m sure someone else will have. Good luck on the journey… hoping that as a family you manage to get the right support for you all :)