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MumR

Hello! 
I’m after some advice and information from people who have been in the same situation. 
I have a 20month old little girl.

She doesn’t say words (although used to say mama, dada, nana, hiya etc) and barely babbles. She never socially smiles at people, where she used to. She doesn’t really like toys other than puzzles.. loves climbing. She is fascinated with her hands and fingers which I have noticed could be related to her feeling nervous.. she’s stares at them. 
She doesn’t respond to her name, ever.  She doesn’t point to things.. shakes her head a lot.. she never gives eye contact. 
she’s very cuddly with me and my partner but doesn’t notice anyone else. She’s often in her own little world. 

I have concerns, should I? I feel as though my instinct is right.

She has had a hearing test which was ‘inconclusive’ due to her not responding. 
Now we have a questionairre to fill in. 

what happens next and what should I expect in terms of the process to diagnosis and help? 

thanks so much for any responses!

I’d be keen to hear from other people who have gone through it this young and if it was an easy process or complicated! 

x 

  • I would say trust your instincts and seek help and advice. Speak to your health visitor or GP. Also some boroughs have a local support service such as Portage or similar that can offer advice to parents. Check your borough’s website. 

  • My son started the assessment process for autism about age 2. I had a feeling there was an issue from him been about 18 months old, he did not always make eye contact with me and had delayed speech. At first I thought he could have been deaf, he did not always seem to notice the world or people around him but would interact with me and was a happy content baby.

    My son was assessed by a community children's doctor because I was worried about his hearing, he did a quick assessment and I asked if he thought he was autistic. When he said he thought he could be but it would take a team of professionals to assess this I thought my world was over.

    I had little knowledge of autism, I blamed everyone the doctor, my husband and myself. However the assessment process took about six months we saw lots of specialists and I learned a lot. By the time his diagnosis of autism came age 2 and a half I was well prepared and we were well supported. He had a school plan and one to one support from the first day in nursery and we had appointments to support his early development. For me I had to reach a point of acceptance and move forward. My son has achieved more than some people thought he would and I have learned to appreciate and celebrate different achievements for my autistic son than my other children. 

  • Hi! I also had an inconclusive hearing test when I was a child; I didn't respond to the sounds because I was focusing on something the assessor was holding.

    In terms of pursuing a diagnosis, I'd recommend following Ross-Mod's advice. You might also find Purple Ella's YouTube channel helpful - she's an autistic adult with autistic children, so she has lots of great insight and advice. 

    In terms of being concerned, autism does come with its challenges, but there are positive sides to it too. Our brains are wired differently, but it doesn't mean we're unable to lead happy, fulfilling lives. Getting the right support helps hugely and it sounds like you're committed to getting that, so that's a great place to start.

  • Hi MumR,

    You might want to have a look at our page here on the NAS site on diagnosis for children - https://www.autism.org.uk/about/diagnosis/children.aspx - if you would like to know more about the process of diagnosing ASD. It walks through the referral process, what to expect in an assessment, and post-diagnostic care. There are also links at the bottom of the page to other NAS services like our helpline and family support service, if you would like to speak to someone directly or get in touch with other families. Hope this is of some help.

    Best wishes,
    Ross - mod