Waiting for Autism Assessment - Pacing

[Mumlookingforadvice]

Hi

My son is 2.5, Nonverbal and shows no sign of understanding language at this point (Eg - he does not recognise his own name or any spoken words) . He flaps his hands and shows other signs of autism (had leading, lack of social interaction) , we are on many waiting lists for an autism assessment.

He has recently started pacing fast from one area of a room to another for up to 30 mins at a time - i am just wondering if anyone else has been through this and if this is something we should try to calm him or stop him doing or if it is something he is doing to help himself sensory wise.

hi there @Mumlookingforadvice my son is 20 months and has all these behaviours you’re talking about. How are you getting on? My ds tends to be happy doing his repetitive behaviours and my health visitor advised that I should let him lead me in what he needs. Other than that I know how hard it is regarding knowing to do what is best, all I keep reading is early intervention is best but have been given no advice what so ever! With a two year wait for an assessment in my area I find this shocking. Is your ds still running back and forth? I tend to let my son and he is happy to do it, we sometimes try and make it a game lol.

@Mumlookingforadvice & @Crispymandm have either of you found the SN section yet? Just wondering if you would find support and information there

@Crispymandm my little boy still likes to run around alot but doesn't pace so much anymore - he seems to find new ways of dealing with over stimulation . He shakes his head now - not frequently and in an alarming way but just as though its one of his things he gets enjoyment from. It is so hard to feel like you cannot access any support or advice. I now have support from CAPS which is a local suport agency in my area that have been able to access PACT therapy for my little boy ( its speech therapy designed for children with suspected autism - in no way trying to change who he is but to help his speech come along if they can) they also help me access other services. I am self referring for a EHCP so that my little one can be considered for a SEN nursery/school place and we are now on the Soical communication pathway for a autism referral ( 12-18 months wait) . Your little one sounds very similar - i must say after nearly a year of fighting the system for support i have learnt that it can send you crazy ( the knowing you need and cant access anything ) but that dropping the focus on diagnosis i was able to access other things for him. Its such a tough time all we want is the best for our kids and it truly feels like we have to fight for that .

Hello @Mumlookingforadvice

I'm sorry you're finding it hard to get advice, sounds as if you're doing pretty much the right things! Just wanted to say you might be able to get support and information from the National Autistic Society, their website is great and they might be able to point you at local support groups as well. (Sorry if you've already tried them, but I found it so hard even to figure out what organisations exist!)

Also MumsNet has Special Needs boards where there are other mums of kids with ASCs diagnosed and waiting for diagnosis, these boards don't appear in Active Threads but they're in the big list of MN talk boards.

I hope your son gets the support he needs. You're doing a great job as his Mum