Low functioning autism surely it’s too early to tell

[Polly421]

Hi

I’ll start with giving some background. My son will be 2 in September. We noticed quite early on he was very delayed in hitting most of his developmental milestone. He has been having physio since January and now can start to sit unaided for a few minutes. We’re still working on getting in and out of the sitting position as he still struggles with this. Our paediatrician referred him for generic blood test, hearing, eye test and all have came back normal. At our last review she referred us to see a neurologist as she was concerned he may have had a muscular condition. She was aware of things in his behaviour we highlighted.

Not responding to his name
Very quiet very rarely babbles too
Barely any eye contact, goes into his own little world quite a lot.
Only plays with car wheels, spinning toys - his occupational therapist asked us to remove his cars so see if he would play with other toys. He continues to do spinning monitors on all other toys is he cant get them to spin he throws toy away.
Very unsettled doesn’t want to be still but can’t move around safely due to gross motor skill delays at the moment.
Doesn't follow any instructions, point, clap etc
Wont touch certain textures, eat certain foods

So today he has his neurology appointment. Both the neurologist and physiotherapist were happy to report he didn’t show signs of having any muscular condition. Developing slowly but on the right path with his gross motor skills. The neurologist went over our family history and I explained that my daughter is awaiting her autism assessment. He told me that within a few minutes of meeting my son he believes he is autistic. This hasn’t surprised us but he said based on how slowly he has developed. He didn’t even acknowledge anyone in the room the full appointment and happily sat with his car, no communication whatsoever with anyone. He said he is writing to the paediatrician to put him on pathway for an autism assessment the now regardless of his age as he’s showing more than enough signs of being autistic and the wait times are long so my son would benefit being referred now. In his opinion he believes my son has low functioning autism. He did say in time he believes his gross motor skill ie walking will happen and he’s got good strength but thinks when he’s on his feet he will be non stop as he does get over excited the now rocking and flapping his hands.


So my question is has anyone been told similar when their child has been so young? And can really judge the severity level so early on?

thanks

[Toomanyminifigs]

I'm sorry this has happened to you. In my experience, some consultants can lack somewhat in the people skills department!

It is good that your DS is being referred for an assessment now as it's certainly true the wait times are long (as you probably know from your DD). Hopefully he will be seen before any decisions have to be taken with regards to schools.

However, in terms of your DS's development or prognosis, I think two is still very young. The thing with autism is it's a developmental disorder, which means development can happen at different times to that of a neurotypical child. For example my DS was completely non verbal until he was 4. He is 12 now and although he uses language in a non-typical way (eg he will talk 'at' you about his specialist interests), he is able to navigate the world in a way I never thought possible.

Of course my DS will never be 'cured' of his autism as it's a life long condition but he is still surprising me in ways I never thought possible when he was a toddler and all he would do is scream.

No one here can predict how your DS is going to develop - and maybe the neurologist thought they were being 'kind' by preparing you for one possible scenario.
I would also say that the medical professionals I have seen (and there have been a lot!) don't tend to use 'low' or 'high' functioning autism as those phrases are obviously quite loaded.

[greenjewel]

It's really positive you've been seen by a neurologist and referred onto the pathway. As he said the waitlist is huge so the earlier you are on it the better.

Functioning labels are something a lot of people take issue with, me included to be honest. They aren't helpful for a variety of reasons. My son was diagnosed as 'low functioning' and it was often used as an excuse not to give us support as he wouldn't be able to do it anyway. I'd take labels with a pinch of salt just keep pushing on and supporting his development. He's only 2 and has loads of time to develop. It may well be far slower but he will develop and progress autistic or not. DS is now 12 (diagnosed just before his 3rd birthday) and he's progressed so much and continues to do so.

[Polly421]

Thanks for you replies. You’ve put my mind at ease.

I see so much progressing in him the now in terms of his gross motor skills as it’s taken a while but he’s improving. His paediatrician wasn’t overly concerned the now with his sensory and communication issues with him being so young but did say she would monitor these. She at this stage wanted rule out genetic and muscular conditions that could causing his delay in gross motors skill. So at least now we have answers regarding that and his next review is set for when he’s turns 2. So will just wait and see what happens then.

The neurologist was lovely and I do think he was trying to help with saying he will contact her to say refer him now. He mentioned as-well about referring my family into seeing another doctor to see if they can establish any links from me and my partner to our kids possibly having autism. As I have another son who isn’t under any referrals as yet but the older he’s got I do see little traits with him.

[Titsflyingsouth]

I think it's often possible to identify if a child is autistic at 2. (My DS is moderately autistic and he was diagnosed at 3, and we were definitely on the diagnosis pathway at 2.) But it is not a perfect science when trying to establish how severe a child may be, I think. Some of the behaviours seen in ASD are also typical toddler behaviours so until you are past that toddler stage, it's hard to tell what behaviours will disappear over time and what will linger.

My DS was pretty much non-verbal until 4. He's 8 now and verbal - albeit with more slower, more awkward speech than his peers.

[Polly421]

@Titsflyingsouth thanks for you reply. Our son will be 2 in September, our little girl will be 4 in October and we’re awaiting her assessment the now she was referred just before she turned 3. She started to say a few words now as she’s been receiving speech therapy for last few months and it has really made a difference.

Im so used to my sons behaviours that they really don’t stand out to me as there a part of everyday life for us now. I think I was more shocked at the appointment that I didn’t even have to say anything about what he’s like the doctor could see it so clearly. We have our paediatrician appointment just after he turns 2. I do think she will say he’s been referred in as neurologist was putting it down as one of his recommendations. Thankfully isn’t showing any signs of a muscular condition and doctor thinks in time he will hit his developmental milestones. His words were he will development when he’s ready to.

[Emmaflo]

@Polly421 Do you mind me asking what your son was like as a baby? And how he’s doing now? X

[Polly421]

@Emmaflo My son turned 3 in September, he was diagnosed as autistic just after he turned 2 last year.

As a baby he was very quiet, never really babbled. He wouldn’t respond to his name, smile back at you if we were smiling at him or trying to make him smile. He wouldn’t give us eye contact. He had very poor head control struggled to hold his head up, this was our first major concern that something wasn’t right.

He is now walking mainly on his tiptoes, never sits still. We were so concerned he wouldn’t walk as struggled to sit for some time but he’s got there after a year worth of physio. He likes to when he's standing sway from side to side and when he’s sitting he rocks constantly back and forth. He still doesn’t respond to his name and still is extremely quiet, he’s yet to say a word. He never gets upset, he does seem happy in his own little world and has recently started to lead us to things he wants. He slowly getting there at his own pace so we just take one day at a time.

[Emmaflo]

Thanks for your reply, I really appreciate it. I’m so glad he is making progress at his own rate. Can I ask how early you flagged any of your concerns with anyone? And how you managed to interact with him as a baby if there was no eye contact or smiling? Something I’m really struggling with with my baby who sounds similar to yours when he was baby xx

[Polly421]

Our concerns were flagged when he was only a few months old firstly due to poor head control and not sitting. He got referred to see the paediatrician about 9 months old. It was then I highlighted all my other concerns about no babbling, no eye contact etc. I would raise any concerns you have now with your health visitor.

Although he wouldn’t engage with us really, we just continued to engage with him, kept singing to him, reading to him and we would lie with him trying to get him to interact with soft toys.