Published on 12, July, 2020
Hi all,
I am looking for advice as I feel I don’t have anyone to speak to about this so here goes...
It all started when my son was referred to speech and language at 2yrs as he didn’t meet the standard level for his speech he was then discharged aged 3.
In reception the teacher approached us about certain behaviour which he thought was linked to autism at the time this was making sure the books were in line in the shelf closing bin lid when walking past to be honest nothing was flagging at the time to us but it was schools concern so he then referred him under the social communication.
Roll on 2 years CAHMS gave my son an initial assessment but nothing flagged apart from his lack of attention, they referred him to take the assessment for ADHD and didn’t score on that either so he was fully discharged from the hospital.
4 months later school, mentors, senco and speech & language specialist all sat in front of us completely disagreeing with the hospital for discharging him as they very strongly feel that he is Autistic. So we have fought him back into the system to have the ADOS assessment to finally get some answers - this took nearly 2 years and had this in jan 19 and there are no answers as he didn’t score again no red flags or should I say not enough.
We feel our son is different, lack of attention, listening and understanding we are also finding days to be challenging and we can’t differentiate between the behaviour of a standard 8 yr old or is there something. Sometimes we feel things shouldn’t be so hard.
Sorry for the long post but I am desperate for some advice from anyone who is in the same position as me, does it mean it’s not autism and something else?
Its been a very long and emotional road so far, any advice from you amazing strong parents would be most grateful thanks x
My daughter also has sleep issues has had since age 2, most nights she only sleeps 3-5 hours and not all at once! It is really difficult when tired,
It can be common for the children to act one way at school and different at home, my daughter has this self imposed perspective that she must be perfect at school and will never do anything out of step or against the rules so teachers see a very well behaved intelligent girl that's a bit awkward. But every little thing that bothers her at school noise, other children talking breaking rules she bottles it up and blows up after school!
With regards to your son did they give no other suggestions when they excluded autism?
We keep sleep journals as well to show routine and how long it takes to get to sleep. Along with behaviour logs as they can be used to support re-referral.
I suggest learning as much as you can as even if your son isn't you may find strategies to help and the knowledge certainly can't hurt! Also look at local support groups other parents may have been through similar experiences and it helps to talk
Good luck
Hi,
Thank you so much for your reply.
We aren’t sure if he is Autistic but we know he is different, I’m just wondering if he isn’t Autistic could there be something else? He clearly acts different in school to at home as if it’s 2 different people.
We are currently waiting on an assessor to observe him in. School this month and go from there.. I thought should I go to the Docs with him but would they just refer him in the same way to CAHMS?
I’m so glad I’m not alone this must be so frustrating for you also, you know more about Autism than I do to be honest I am struggling to understand it all and if he is or isn’t as I know it doesn’t have to be too obvious. He doesn’t seem to have sensory issues the only thing we have noticed time to time is he complain of something being too loud and hurts his ears. I haven’t made a log of anything tbh, maybe I should sounds like a good idea however I just feel so clueless to it all I’m not sure how else best to deal with things. Our current issues are that he fights every night to go to bed I have to explain why we all have to sleep each night I’m sure he doesn’t have enough sleep if he goes to sleep late he is still always up early. I feel he has a lack of understanding and processing of information when you are talking to him and sometimes misses social cues and jokes etc.. he can come out with things that just don’t make any sense at all? Impulsive behaviour which is hard to prevent as he chooses not to listen to us, listening and attention is horrendous and so frustrating. He isn’t affected with disruption in routine he obviously has evening routines but anything goes in the day I don’t need to prepare him, he makes friends very easy and is very chatty a bit too chatty maybe this is a trait also ? He can talk non stop wanting to tell us things it wouldn’t be as much a 2 way conversation sometimes feels like he needs to let this outburst of information out and can say mum around 10times although I’m already listening and has my full attention. He does silly things without thinking and he has now developed an obsession with having lots of paper pads, pens fiddly bits in boxes all in a back pack and sometimes hard to go out of the door without but other times won’t be bothered at all.
We know he has traits, but we don’t know whether some of the things are just typical of an 8 yr old, he’s also started with an attitude and answers back without realising he’s doing it. Knowing either way will obviously help but I’m not sure what support is given if he is I’ve heard not a lot so this fills me with no confidence to deal with things.
School have a personal education plan for him and have help in place already as if he is diagnosed. I don’t know what to do atm I feel like I’m drowning with dealing with things and learning what it’s all about. I will take your advice and try those things.
Thanks again and hope you get answers soon.
This must be so frustrating for you, since the school and others are agreeing with you that your son is probably autistic I would demand a second opinion at a different assessment centre. Is private an option?
Unfortunately assessment can be wrong I know of a girl in our area who was diagnosed on her 3Rd attempt! Her parents had been trying since she was 6 she got diagnosis at 13.
We have been bounced between departments for five years with no assessment for our 8 year old daughter, so you are not alone.
Have school put any support in place for him? This can be done without diagnosis. Have you tried keeping behaviour logs to help spot any patterns with challenging behaviour so you can identify triggers, have you looked at sensory problems causing issues?
We are sure our daughter is autistic, but don't hold much faith that the local cdc will diagnose any time soon so are proceeding as if she already has diagnosis we introduced visual timetable, safe space, feelings charts and social stories and encourage alot of stimming to self regulate, all this has helped.
Trust your instincts and keep fighting for him