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Potentially autistic 3 and 1 year old

m.e.f.p

Hello everyone, I am going to try and keep this as short as possible.

I have a 3 year old who I have believed for a little while now to be autistic. He has always been non-verbal and near to his third birthday, he had his first evaluation with a speech and language therapist. We understand that he uses 'jargon' and I have reason to believe that he has very recently started to (occasionally) use non- functional echolalia. Obviously, his lack of speech is not the only reason I believe him to be autistic, there are many more - sleep problems, food problems, lack of appropriate emotion, no sense of danger, rarely responds to his name, repetitive behaviors, doesn't react well to change in routine, some sensory issues (seems to dislike or be overwhelmed by seeing people with things on their heads or faces/screams at buzzing sounds such as at the hair dressers or electric toothbrushes/etc.).

Now I am also coming to terms with the fact that I also believe my eighteen month old little girl may also be the same. She also doesn't say any words and seems to be more delayed (rarely babbles, just makes noises more than anything) than even my son was at that age. She can't/won't use a spoon, can't seem to drink properly from anything but a baby bottle, her sleep is awful, she rarely responds to her name, she doesn't play with toys like a typical child (she just throws things/knocks things over/or runs around in circles holding onto them), I believe she has a 'head-shaking stim', and just her general behavior seems to be what I consider 'involuntarily aggressive'.

Note: Please bare in mind that for both children, I have only listed a few of the traits that I believe they have, just to give an idea - there are many more for both.

When I had my little girl, it hadn't even crossed my mind that my son MAY be on the spectrum - I just thought he was speech delayed. So to then come to the realization that my daughter may also have it, hit me like a train. Now I'm also pregnant with my 3rd and where I was oblivious before, it has all happened so fast and I don't know how to keep up or what to do.

Now I know I can't possibly know for sure but I feel like I am as certain as I can be without a professional telling me officially. The problem I'm having is that I have no choice but to go through the NHS for this process and the waiting list for the pediatrician is SO long, never mind everything that comes after that, including all the speech and language therapy and now to have to get the ball rolling with with my little girl also. Not to mention, with the current circumstances of COVID-19 lockdown/social distancing etc. and everything else going on, it seems like we will be waiting even longer (understandably).

What I was hoping for is absolutely ANY advice on what I can do in the meantime. I know the spectrum is vast and every single child is different, but I can't just sit back while waiting for the professionals while my children are either at a standstill or could potentially regress. Is there any where I can learn some things to do at home with them? Are there online courses I could take to learn how to help them? What about discipline? How do I know when I'm doing the right thing or making something worse? How can I teach sharing? Potty training for my son? Advice on sleep for my 18mo? Am I worrying too much or not enough? I would literally appreciate any advice.

I am so lost and have no idea where to turn. Health visitors, GP's etc have been almost useless thus far. I'm really trying my best to keep my head above water while preparing for a new baby in lockdown, keep myself and my children healthy during this time and dealing with major sleep deprivation/mum-guilt etc. 

I just want to do whats right for them.

Thanks in advance.

 Note: I apologize if I have used any terms/words in the wrong context or not appropriately. 

  • in reply to NAS66823

    Thank you so much for sharing your experience. Hope you are staying well and  safe especially what is happening at the moment!

    may I ask how he now? What was the biggest setback you had to deal with? 

    Many thanks

  • I'm new to this forum to, hope this helps. My child is a teenager so we did all this a while ago.

    We used things he liked to help with learning.  Used Thomas the tank engine to learn basic colours,numbers and shapes. Also helped with motor skills building the track and playing with trains. We watched endless Thomas videos and he would repeat the stories word for word when he played with the trains. Worrying at the time but this memory skill has been very useful .

    Discipline was difficult as we had aggressive behaviour to deal with. Distraction worked quite well, giving him something he could have or do to divert his attention.  I did avoid things that I knew were triggers for a melt down if I could. Turn taking was encouraged by playing board games. 

    We made a pictorial timetable for daily activities with photos and pictures from an Argos catalogue,stuck to a board with velcro, this was really useful. The local authority ran a scheme called Early bird for parents, I don't know if it's still available or whether you can access something online.

    I did give up with potty training and after a messy spell he just sorted it out for himself. I found I would have to regularly give an instruction over several weeks without expecting a result  to give  time for him to process information. 

    Gp's and health visitors only helped with referrals to other services but any support you can access is worth trying.

    Don't worry about worrying, every parent worries, have patience. 

  • I'm new to this forum to, hope this helps as my child is a teenager so we did all this a while ago.

    We used things he liked to help with learning. Basic colours, numbers and shapes were learnt from Thomas the tank engine, also motor skills building the track and playing with trains. At the time the local authority ran the Early bird parenting course, not sure if it's still available, or whether you can access something online. Also found using a pictorial timetable worked really well.  Made it ourselves using photos and pictures from an Argos catalogue, stuck on a board with velcro.

    Discipline was difficult,we had aggressive behaviour to deal with.  Distraction was easier, offering something he could do or have to divert his attention. Eventually learnt sharing playing board games.

    Everything takes a lot of time and patience, especially when your child doesn't seem to be paying any attention. Then out of the blue they'll point to a plate and say 'circle ' !

  • Hello m.e.f.p

    I am very new to this forum. 

    I'm very sorry to hear about your situation. I have a boy 28 months, recently got diagnosed with ASD. His symptoms are exactly like your son's and I can relate with this. He got referred for his speech therapy but I m waiting for it to happen. We also got portage service started but had to stop atm becoz of the outbreak. I feel so overwhelmed and sometimes doesn't know what to do. My only dream for my little boy is now is to make him independent so that he can live normal life like any other children. It's really worrying when I think about how he will do in future!

    Soon after his diagnosis, I found an online course from the newskills academy and it helped me a lot to know about ASD. I started singing him nursery rhymes especially the ones you can do action like rings round the roses, head shoulder knees and toes and wind the bubbin up etc., I found exercise is very good especially I found him jumping on the trampoline very helpful. He is very happy boy and now starting lots of eye contact, sitting down when I draw some colurful pictures with him. But still got lots of problems eating, sleeping, meltdowns. 

    Some people my friends suggested me just following routines and with lots of guidance he will be ok but like yourself I don't know exactly what to do. But I am willing to try anything for him. 

    I stated watching lots of guidance/videos like ABA therapy on you tubes etc just to get some guidance, and some of them are helpful too.

    Hope it helps!

    P.s sorry if there are typing mistakes as I m not very good at it.

  • Hello m.e.f.p. 

    I'm sorry to hear that you're feeling to helpless and lost. 

    You may like to read our general information about autism:

    http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx

    All the best, Karin Mod