Possible autism, don’t know where to turn

[Jackleila14]

Hi , I don’t even know where to begin with this but I am desperately in need of advice so I will try to cut to the chase . My ds is 2 years and 3 months old and I have felt that something wasn’t quite right since he was very very young , we are at a point where we’ve hit a wall and I don’t know what to do next. My ds will be having his 4th hearing test Tuesday although the lady believes he can hear . He can recognise and say his colours , numbers up to 10 and backwards , some animals and shapes (although not very clearly at all ) but he doesn’t communicate with me. He does not call me mummy or show us what he needs . He has however been turned down for paediatric referral twice because he has no issues with food or sleep , he is an extremely calm child who is very loving and likes to share toys with me and cuddle me and he also has fairly good eye contact but he has no idea what I’m talking about most of the time . He doesn’t follow “commands “ or understand me very much at all. I am absolutely desperate to understand what is going on , has any one else been through something similar to this and what was the outcome ? We are under a speech therapist at the moment but no body else seems too bothered . I want to add I would not change my son for the entire world I just want to help him to communicate his needs with me and if I’m totally honest I want to know why he is developing differently to my dd6 and all of the many other children in my family .

Hi, I’m sorry I don’t have any advice but just thought I’d point you in the direction of the special needs section. There are lots of amazing parents on there who would probably be able to give you advice and maybe put your mind at rest one way or another.

www.mumsnet.com/Talk/special_needs

Sounds like mine at that age. Everything was dismissed as a bilingual child being slow to talk. It wasnt until he was 4 and the speech therapist raised concerns that we got the referral. No issues with food or sleep at that age.

If i were you I would read up on how to handle autism and crack on as if you have a diagnosis. Download pictogrammer, join support groups on fb. Id really recommend autism a practical guide for parents by alan yau.

Does he go to nursery? Are there any early years practitioners in his life? Could they push too?

Thank you, I’ll give it a go. Wasn’t sure if I should post it there or not because we don’t have a diagnosis .

Talk to your HV. If he goes to nursery talk to senco. It,s still young to get a diagnoses but don,t ignore your insticts. Look up the Autistics society thewy may tell you of support in your area. But also find a focus for now, what do you feel is putting your child at a current disadvantage, what do you think will help?

Thank you for your reply. Has your dc now been diagnosed ? I know it isn’t the end of the world if my ds has autism but I am really struggling with the uncertainty and the thought that this could go on for years is so scary. I adore my son just the way he is but I won’t say I haven’t seriously struggled with this and my mental health has taken a bit of a nose dive . There is autism on both mine and dh side of the family so I’m not totally clueless but I was naive to think that if he had autism he would stim or find it hard to self sooth ect my ds seems almost to be the extreme opposite, he is an unusually calm toddler . I’ll have a look at pictogrammer , speech therapist suggested learning makaton but he doesn’t seem to be taking it in but he is a very visual learner and does well with flash cards.

I forgot to add , he will be old enough for pre school in just a few months but the one closest to us, which is also a really good pre school, is full and they’ve said we will have to go on a waiting list .

Have you had his sight checked?

No but that’s a good point , I’ve noticed lately that he does squint a bit and I’m going to bring this up tues. Do you think this could effect his speech / understanding?

Yes, absolutely it could.
Also please keep up the Makaton. The aim is to improve his understanding of language, not necessarily his use of language. Many children, with a variety of needs, find Makaton useful to help them access language even if they never use it themselves.

That’s good to know , I will definitely keep it up in that case .

I'm in a similar situation with my own DD who is around the same age. First, have a look at the "More than Words" book - don't buy from Amazon - it's cheaper to buy direct from Winslow (the publisher). It's a guide for parents of children with autism/ suspected autism or social/ communication difficulties. It has a whole bunch of strategies for you to use at home as a parent to help your child communicate and open up. There are loads of books but this one is linked to Hanen - the type of intervention used by lots of health boards/ local authorities. My DD never initiated contact or made eye contact but using just a few strategies of the type in this book seems to have opened her up quite a lot. Read the reviews - parents really like it. A lot of it you are probably doing anyway but there is useful stuff on making your child understand the need to communicate. Secondly, it sounds to me like you are getting really poor service from the NHS. I went to my GP saying I was worried about my DD and gave the reasons why (poor eye contact, not pointing it waving, living known world lots of the day etc). A referral was made to the paediatric service and we saw a specialist nurse who sent us on to SALT and a doctor. We are still going through the process but my DH complained about the complete lack of contact/ during waiting time using an NHS complaint form online, pointing out that our DD was missing out at a golden opportunity for intervention (aged 2). A nurse called us within a few days and we had a telephone consultation with SALT and specialist doctor within a few weeks of complaint. Be persistent, insist and complain. You could also speak to your HV and ask about being priority for nursery hours - children with special needs or social issues can be put forward to front of queue if HV recommends it. I don't know the process for this but you could ask