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Autism concerns

4 replies

Leena4782 · 06/01/2023 07:37

Hi all - this is yet another follow up to my previous posts. I guess I am just looking for a little insight and advice. I have had concerns about my boys development since just after he turned 12 months. He had at the time what I felt was a regression in his social skills. We got a play based SALT involved straight away as at the time he completely stopped babbling as well. We have done lots around play and joint attention and strategies to encourage language - lots from the more than words book etc which I have found invaluable. He is now just 22 months. He was assessed for ASD around 2 months ago and they did not think he was on the spectrum. We however live in a regional area in New Zealand and the diagnosis process I feel was very poor compared to the larger centers. Language wise be now has over 100 words that he uses - however he is unable to pronounce the final consonant on any of his words. I know this can be normal in this age group initially but he has literally no full words. The way he uses his language I find unusual and quite unnatural in a way - almost like he uses words we have 'taught' him in the exact same scenarios and contexts but doesn't seem to generalize them to different situations? He pointed to request early maybe around 13 months but only started pointing to share 2 days after turning 18 months - it was sporadic to begin with but now he does it quite often. His receptive language is fantastic and he answers questions appropiately verbally with no or yah. He only put his arms up to be picked up around 18 months and that was after seeing other children do it - same with showing toys. I feel he started doing this after a playdate with a little boy who was doing it profusely. He is quite sociable with me and his dad and my mum who he loves to bits and a few other close family members however he is not really affectionate at all and will often struggle to get away if we try to cuddle him. He always brings us toys to show us and involve us in his play. I feel he is quite repetative with his play which I also know toddlere can be but I feel it goes further than this? His only imaginative play is specific things we have shown him ie feeding dolly and animals with a spoon, pouring pretend drinks etc and making pretend food. He will repeat these actions and today actually came out with a pretend phone up to his ear and said hi into it whilst looking for our reaction. He sleeps and eats well. He has always mimicked well. He definately communicates for social reasons a lot but then sometimes he seems to just switch off from people and tune us out. He has always responded well to his name. He is in daycare 2 days a week and I feel he is potentially finding this quite hard. When the teachers say good morning to him he does not even register them - it's not like a shyness it is just his face stays blank and he shows no recognition at all. Once he settles and warms up he can communicate quite well according to the teachers. I'm not even sure what I am asking to be honest. I am being told left right and centre that he is fine - I have had concerns for 10 months now and it has consumed my life which I hate. I have been seeing a counsellar to try and deal with all of the feelings and to be honest I just feel like I am going mad. He has so so many positive qualities.... but there is something.... do I just have to wait a few years and see? Should I go private and have a proper assessment done? Any insight so appreciated. I am trying desperately to move on with life and put it aside- but I feel so alone being the only one seeing these things and worrying about his future.

OP posts:
Leena4782 · 06/01/2023 07:43

I should add he follows instructions beautifully and has done for months - including putting things in on under etc with no gestures. Could it be asbergers? HFA? I realise they are the same thing technically now. It's like hes not developmentally delayed as such but just a bit unusual. I should also add I see a lot of traits in myself after all my research over the past few months - sensory issues, very literal, very overwhelmed in large groups and quite a few other things. I have a great life so I guess that should give me hope.

OP posts:
Leena4782 · 08/01/2023 07:19

Anyone? 😣

OP posts:
Worriedmum166 · 23/01/2023 21:07

Hi Leena,
I feel like I could have written some of your post myself. My son is 28months and we have just started the process of having him assessed.
My son can do so many things but definitely has a few quirks, I'm just so torn. It's consuming my whole life, I can't get it out of my head and it's having such a negative effect on my life! I'm contemplating seeing the doctor! At the end of the day, he's still my beautiful little boy and I'll love him and support him all the way! I just am heartbroken that life may be alot harder for him than I had anticipated. In saying that I know life can be hard for anyone. I guess I'm just sad! So so sad about it all. Just wanted to give you a reply, you're not on your own.

Debbles75 · 31/01/2023 17:09

Hello @Leena4782 , Mum of a 12 year old boy with autism here. I'm also a nurse and with training and experience in neurodevelopment (autism) assessment . I'm curious to know whether your son was screened for indicators for autism or whether he actually went through to have a full autism assessment? In the UK, a full autism assessment involves a parent interview (an extensive list of questions about your sons development and his play and communication) as well as an observation of your son working through a series of activities with the clinician. There would also be an observation of your son in school or school would be sent a school feedback questionnaire to complete that details your sons behaviours and interaction in the school environment. It is a very comprehensive assessment and takes three cincians reviewing all the gathered info before a diagnostic outcome is reached. If you have done this and have been told he does not meet criteria, have you been given any recommendations around how to manage the behaviours that you are concerned about? or any other possible explanations for your sons behaviours? I know when I worked in neurodevelopmental assessments, we would make recommendations for behaviour management regardless of assessment outcome and we would also recommend other assessments i.e: adhd if we felt this was indicated. You are right that we no longer differentiate between autism and aspergers. Autism is now thought of as a spectrum with no two children with autism being the same. I would say though that differences in communication can be quite subtle with autism, for example you could have one child who is avoidant of interaction and so perhaps stands out more and another who is socially motivated but perhaps shows differences in their communication style, possibly monologuing, using exagerated body language or even no body language when communicating. Presentation really does vary. From what you describe, I would be wanting to explore more or perhaps go back to the team that assessed your son and ask to talk through the report. Ask them how they arrived at their conclusion. they should be happy to go through this with you. If you can afford to pay for a private assessment, you could try this company, which is the new branch of the company that I previously worked for: melios.org.uk/

I really hope you find the answers that you need.

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