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Undiagnosed Three Year Old with a fed up and worn out mummy

ChelseaIsDeterminedForADiagnosis

I've been almost sure that Bradley has had Autism since he was around two or three months of age. I thought I was lucky that I had a chilled out baby who started sleeping through the night almost straight away and never cried but then as milestones came and went much later on than expected I knew there was more to it. I feel like everyone is fobbing me off and almost saying 'don't be so ridiculous' when I express my worries and I feel that I'm getting no where. I'm the mum who's child is 'naughty' and is constantly pushing other children over with such a force that they scream but then I have no explanation as to why he can't say sorry or understand that what he did was wrong. I've compiled a list of all the little and big things he does that I think may be related to Autism and would be extremely grateful if anyone could take the time to read through it and tell me if they are having the same experiences or if they have an older, diagnosed child who had the same or similar symptoms. Thanks in advance, Chelsea.

Difficulty with verbal communication including problems using and understanding language - Bradleys language skill has only ever gotten as far as the occasional two word phrase. He has never called me mama or referred  to me as anything

Inability to participate in a conversation

Difficulty with social interaction including relating to people and surroundings

Difficulty making friends - he prefers to play alone

Unusual ways of playing with toys - lines cars up and tips things over to spin the wheels

Difficulties adjusting to changes in routine - absolutely nightmarish when we have to go out for the day

Repetative body movements - he loves spinning around in circles

Loves unusual objects and gets distracted by anything that spins

Doesn't maintain eye contact for long

Complete lack of danger awareness - often attempting to run into roads and even throwing tantrums in the middle of them

Hasn't shown any interests whatsoever in potty training

Refuses to try new food and often refuses food he used to enjoy

Tantrums and forcibly throwing anything he can lift when he can't express himself

Pushes other children and doesn't understand that it's wrong and isn't phased or bothered by punishment

Doesn't understand what he's being told

Walks on his tiptoes

Very rarely reacts to pain

6-12 months of age: Didn't show affection to me or any other caregiver, didn't respond to sounds around him, didn't make vowel sounds or babble, didn't look where I pointed,  didn't respond to his name, didn't play back and forth type games and didn't recognise familiar people. 

12-18 months of age: Bradley didn't point to things, he still didn't babble or coo, he lost skills he once had like waving, he didn't know what familiar things like a phone or a cup were used for, he didn't copy others, he didn't know more than two words and he didn't notice or care if me or another caregiver came or left.

18-30 months of age: Bradley never used two word sentences or phrases, he still didn't know what familiar things were used for, he didn't imitate actions, he didn't follow simple instructions, he couldn't walk steadily or slowly and fell over often. 

Bradley is now three years old and still can't do a lot of these things although has  independently learnt how to do a few. He can't work out simple nine piece jigsaws and other similar things. He doesn't play make believe or pretend and if an activity involves sitting still or down he will not join in. Bradley often falls over and walks into things and pulls away when I hug him. He often appears to be in his own world and very rarely responds when I say his name. Bradleys memory is outstanding though, he will often remember the way to places we have been to only once or twice and will often ask to go 'that way' and pointing in the direction. 

Any help is some help,  please, please get back to me.

  • Well it sounds as if you are on the right path at least!  Don't worry about having to wait for the GP appointment - the whole process can take a frustratingly long time in my experience.  In our case it took years, not weeks!  Just make sure you go to the GP fully prepared and insist on a referral - there are legal guidelines which I am not clued up on but someone else might be. 

    In the meantime, I would suggested reading as much as you can on ASD.  We had put lots of autism parenting strategies into place before the diagnosis came.  I was reluctant to access support groups and and childrens play clubs specifically for children with special needs until we had the diagnosis and I regret that now.  I would urge you to join these - you will get a lot of support!  There are lots of people out there like you who don't get the help they need in the early days. Smile

  • Hi, yes I have tried positive reinforcement and it does work but the next day or maybe even hours later it's like he's forgot all about it and does something that he knows is wrong (throwing his dinner on the floor or tipping the dogs water bowl up.)

    Unfortunately all of my family lives miles away but my partner is a great support. Bradley seems to cooperate more for her and generally seems more relaxed. However she works long hours so we don't see her all that often in the day time. 

    I'm not sure about clubs yet but I will look into it. Thank you for getting back to me :)

  • Hello, yes he attends nursery five days a week for three hours each time. His key worker there doesn't know a lot about autism and she has referred me to the disability coordinayer for the school. I have made an appointment with the GP but the earliest one I could get was for the 19th :(

    I've seen his health visitor a few times when he was younger about it and each time she has just laughed it off.

    Thanks for getting back to me :)

  • Hi Chelsea

    My son's have aspergers so some of the behaviours you see were present in my son's from any early age.  However they are high functioning so their language skills are and were phenomenal from an early age, often referred to as little professors.

    Whilst waiting for a diagnosis there are things you can do to help.  you mentioned that he doesn't respond well to punishment.  Have you tried positive reinforcement?  In that you focus only on all the positive things he does no matter how small in the hopes that he begins to want to do those things more.

    It is a technique I used and they responded well to it.  

    It can be exhausting dealing with these behaviours so try and get some downtime for you.  Is there other family members who can help?

    do you have any support clubs or groups in your area.  You could pop along and speak to other parents and observe diagnosed children and get some clarity on your concerns.

    In the meantime, try to enjoy your son's quirkiness and try to get into his world.

    Hope this doesn't sound like I am trivializing your worries, that is not my intention.

  • Hi Chelsea! Having read your post I can completely understand why you are frustrated.  Obviously you say your son is undiagnosed and you feel you are being fobbed off - I just wanted to ask a few questions which might help people pass on advice to you.  Is your son at a nursery/pre-school?  Have you been to your GP and if so has your son been referred on?  Sorry if these seem obvious questions to you.

    You are certainly not on your own - my son was also dismissed by professionals for several years before getting diagnosed.  That's not to say that your son has autism - that's obviously not for us to say but perhaps we can help point you in the right direction.