My grand daughter is 9 and has septo optic dysplasia and recently some behaviours that she has always had have got much worse

she can not concentrate on anything unless she is humming or singing she is convinced no one at school likes her she chews all sorts of things like clothing, belts, corners of books ect and is very restricted in what she eats ie fish fingers which she takes all batter off eats fish then the batter, cheese sandwiches again eating cheese first then bread and bannanas I am wondering if she could have a mild form of autism her regular hospital appointment is not due for 3 months and GP thinks she is just playing us up am I being over reactive do you think

5 Replies

  • I do not recognise most of the symptoms you describe Cribbi. But your child is six years older than mine. The food fetishes are one thing I recognise. But I must admit with 8 adult kids & 9 grandchildren I've seen everything there is to see with children's eating habits. The thing that stuck out most in your post was your GP's response! Typical of family doctors! And he/she is so wrong! Children do not seek attention! They do not know how to! Parents miss things in the care of children and then children compensate for that by different behaviour! Your GP is wrong. Humming or singing by a child in my opinion is good. I'm not a professional. Just a Dad & Grandad. If she thinks others in her class don't like her, well there are many prejudices in life. Is she black? Is she white? Does she wear different clothes? Does she have big teeth? An eye squint? I wet the bed when I was in school 50 years ago. All the kids said I was smelly. I was. Cribb one other thing I am interested in is her obsession with chewing on book corners, belts, edges of clothing. This is a sign of something lacking in the blood. It is common in children, but needs the diagnosis of a paediatrician and a Dietician. Your child may also have some mild psychological issue from her formative years. Your description to me does not sound like a spectrum issue. But do not allow your GP to dismiss this. Tell him straight or put it in writing that you want your little girl investigated for Autism/Asperger's. The process will then begin. Wish you & your daughter all the best. Take care.

  • Hi toni thanks for your reply its ggiven me food for thought regarding school she

    is very and thin small for her age she also blind in one eye but this os not visible to anyone as for the chewing things if it due to lack of something in the blood this could be due to her condition although she has regular blood scans may be not scanning for every thing I think we will ask to see the paediatrician again before school starts again

  • Try a paediatric multivitamin Cribb. You will know of pregnant women having longings for foods. Well the reason for that is the foetus is longing for something. My sister-in-law used to take cinders from the dead fire and chew them when she was pregnant. Shortly before she was due she was found to be low in calcium. She was on iron and vitamins but NOT calcium. But if your medical advisors are doing their job properly and not worrying how much your child costs them then they should have already detected this. I would like to keep in touch Cribb. Let me know how things go. If you put things in writing always keep a photocopy. I can't actually represent my Grand child because my daughter disagrees that there is anything wrong with him. I will wait till he starts pre school in September.

  • Septo-Optic Dysplasia is a genetic disorder of early brain development. It is usually diagnosed by 3 Cardinal features, underdevelopment of the optic nerves, abnormal formations of the structures around the midline of the brain and pituitary hypoplasia. Although your grand-daughter may absolutely exhibiting the signs and symptoms of autism, she will not be diagnosed as austitic as there is a genetic diagnosis which explains her diagnosis. However, that doesn't mean that she will not benefit from therapies and treatment programs just like children with autism do. One could argue the well, she has Septo-Optic Dysplasia and she could have autism, but it really depends on how different her symptoms are from others with the same diagnosis. Since Septo-Optic Dysplasia is rare, I have only seen one who was similar with Accardi's syndrome myself, the argument could be made. Either way if she is in school and is convinced that others do not like her and is using verbal stimming, similar to children with autism, then I think you should plow ahead and demand that she be afforded therapies to assist her in the academic and social settings. Good luck and continue to advocate for your grand-daughter. As a new grandmother myself, I now understand the depth and fierce drive to protect not only your children but also your children's children. 

  • I also do not think she is playing you, I think she is trying to self-advocate and I say to your GP, prove she is playing us. You are not over-reacting. You are trying to help her find her place in the world and make sure it is a safe happy place to be. Again, push push push, inform them of her self esteem and how it is falling as she needs interventions, just like children with autism.

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