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I'm UK based and have 6 children:

  • Child 1: female, has a formal diagnosis of autism, NF1.
  • Child 2: male, has a formal diagnosis of Asperger's, also has other health problems. Both children present in stark contrasts but also some similarities.
  • Children 3, 4: females, late talkers but could understand me and gestured accordingly so I was not worried.
  • Child 5: male, is worrying me. He is 22 months old, has no speech whatsoever, not even the 'typical' mumma, dadda, etc. He does baby babble but most of his verbal communication is via intense high pitched screaming and head banging - he will dive into me head first full pelt. He does not gesture (i.e., point, wave) nor does he appear to understand what is being said to him ("get cup", "get shoes"). He will very rarely answer to his name.

He hates baths, hair washing, haircuts and being in car seats and pushchairs, and point blank refuses to wear any kind of shoes even in winter (wants to be bare foot.) He also 'flaps' certain types of objects like laces, necklaces, things of that kind and if the momentum of the 'flap' is not right he has a massive screaming fit. He also hates our living room rugs corners to be out of place and gets angry if there is normal house mess like toys on the floor.

He has a lot of toys but does not play with them in a usual way and does not sustain interest in them even if I play cars with him - he will spin the wheels then chuck the car and walk away. He also has a permanent comfort blanket and bites it and also has a massive habit of biting me really hard.

He spins and rocks a lot as well. He can scream for hours for no obvious reason (common reasons checked for to no avail - hungry, thirsty, nappy, hurt, sick, bored, needs a cuddle etc.) He hates certain noises like raised voices and baby crying and will be very distressed by this.

He has had severe reflux which was medicated via hospital and though now has resolved (unless he is ill) he has massive feeding problems, hates solid foods and will only have limited foods. He is under hospital care for this but no progress so far, he has never had a solid poo.

He was also in hospital over the winter for breathing problems and very low O2. He walked and sat on time. He plays alongside siblings mainly sometimes with but will not instigate any play.

I have requested to see a speech and language therapist but I am being given the run around. He was a very wanted child, he is loved by myself, husband and his siblings and we make sure he is not left out.

I have had so many years of fighting with officials in regard to my older children so this time we have been proactive in seeking help when we have noticed issues with this child, but as I said we keep getting fobbed off. I would like to hear someone else's opinion on what they think could be if anything as it would be nice to know I'm not losing my remaining one brain cell!

I am not looking for a diagnosis, google diagnosis or using this in place of medical care or for any stupid reason (child is under hospital and dietician care). I'm purely seeking well intentioned advice and opinion.

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    Welcome to Parenting.SE. Since you're seeking opinion, this may need to be closed as off-topic (we limit ourselves to questions that have objective answers). I am not sure what help we can provide. I sympathize with your concerns, but this may not be the right place.
    – Acire
    Apr 25, 2015 at 15:42
  • @Erica - I'm sorry, was posting as you commented!
    – anongoodnurse
    Apr 25, 2015 at 15:51
  • It's fine ;) the Close decision may be better as a community input process, rather than a moderator fiat, in this case
    – Acire
    Apr 25, 2015 at 15:54
  • It may be the case that your question is better phrased as "I just want to get my child the best help he/she needs. Are there any organisations that can help fast-track the process to either a diagnosis or reassurance that he's just a bit different?"
    – David Boshton
    Apr 27, 2015 at 8:21
  • He might be a genius. Everyone knows Einstein had an abnormal developmental curve, falling very much so on the delayed side in the beginning. Granted, you describe some particulars that are often attributed to autism of some degree. I hope it works out though. I doubt this comment is saying anything you don't already know, but optimistically, history has provided a few rare instances of brilliance originating in similar ways.
    – Kai Qing
    Apr 27, 2015 at 22:38

2 Answers 2

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You're not losing your "one remaining brain cell". You are absolutely right in wanting the child tested for anything and everything, and with the signs you discuss, I have no idea why your requests aren't being carried out.

Regardless of what exactly is going on with your child, a parent's feeling that something is not right is one of the most reliable criteria that there is something amiss. And as more and more studies show, the earlier it's diagnosed and intervention started, the better the outcome.

I'm based in the US; maybe someone in the UK can be more helpful to you. In the US, hearing tests can be done at any time, and tests for autism can start at 18 months of age.

I cannot imagine why your doctor is fobbing you off. Ask again, and if no response, insist on a second opinion (preferably a specialist in children with developmental disorders) as soon as possible. While you wait to see the specialist, gather evidence of a hearing impairment, a highly sensitive child, or possible autism by reviewing video recordings which will show attainment or delay of developmental milestones, social emotional function or dysfunction - look especially for communication (speech, indication of what he wants - pointing, etc - or lack thereof), silent play vs. play with others, etc.

Please look for other clues that she's easily disturbed by bodily sensations, such as certain kinds of shirts, labels on her shirts, a reluctance to try or eat new foods, and, among other things, a strong (if charming) desire for strict-ish routines. If he shows any of these signs (it appears that he does), please read about the "highly sensitive child".

This PDF called the Denver Developmental II scale. It represents normal milestones in development and is used around the world. You can start with these milestones in mind. Also, a rather long paper on seeking assessments for children lists other checklists you may be able to find online as well (Appendix C, p. 292).

Keep advocating for your child, and don't worry about whether you're right or wrong. The truth is that your child's communication skills are delayed, and that in itself merits investigation.

Parent Pathways: Recognition and Responses to Developmental Delays in Young Children

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    +1 Great answer overall, but thanks especially for bringing up the "highly sensitive child" issue. Hypersensitive responses are often associated with both ASD and eating disorders in children https://en.wikipedia.org/wiki/Sensory_processing_disorder#Autistic_spectrum_disorders_and_difficulties_of_sensory_processing
    – Rose Hartman
    Oct 12, 2017 at 4:17
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    @RoseHartman - Thanks for the comment. I have to admit, though I've known my fair share of "highly sensitive children" (including one with a severe eating disorder), I am very unsure where they fit into the whole ASD thing. Some clearly would, many would not. I tend to treat each case individually, but I tread lightly.
    – anongoodnurse
    Oct 12, 2017 at 16:21
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    Yes, absolutely --- ASD is so heterogeneous, there's really very little that holds across the board. And the research on sensitivity issues in childhood is mixed, especially since, if it is its own disorder, it's highly comorbid (ncbi.nlm.nih.gov/pmc/articles/PMC3208137).
    – Rose Hartman
    Oct 15, 2017 at 17:10
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    @RoseHartman - Yes, as so many disorders are. I think we'll all be surprised by the genetic research into psychiatric disorders in the next 10-20 years. The era of blaming the mother is gone. The era of blaming the parents is starting to erode in some cases. Neuroscience is incredibly interesting.
    – anongoodnurse
    Oct 15, 2017 at 17:17
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When we were heading towards a diagnosis for our eldest son (in the UK as well) one of the things we did was to go private for an audiology test so we could rule that out. We needed this step fast to get the autism statement moving before school started so we could get special needs assistance in place.

Of course we were lucky to be in a position to afford it, but just so you know it cost us about £90 (three years ago). If it's an option for you it would cut off waiting around for audiology once the GPS starts paying attention - assuming they do.

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