My son is three, and his speech therapist is starting to query his development. She is wondering if there is a possibility of a form of autism. I have noticed that his speech was delayed, and that he repeats things endlessly ,becomes upset over things that don’t bother the other kids, doesn’t understand new concepts easily and is taking forever to potty train.  Does anyone else have any experience similar to this?
I am hoping against hope that he is just ‘delayed’ because of all his difficulties in his first 18 mnths, but am starting to feel despondent.

Hi there

We do find that some TOF children may be delayed with their speech if they have started solid and chewy food later than their peers so your Speech Therapist is on the ball.

Its not necessarily an indicator of autism and certainly at 3 your little chap is experiencing lots of new things at once.  If you are really concerned you could ask for a referral to a paediatrician.

Please ring me at TOFS if you want a chat

Helene

As well as being a TOF Mum, I am an Educational Psychologist who specialises in Autism.
There is no suggested link between TOF/OA and autism, but a lot of our little ones may show a little delay in their development early on due to all the time in hospital etc.
They can catch up with this with a bit of love and attention, which I’m sure you are giving all the time!!! Hope this puts your mind at rest a little.
Claire

Hi Leah my name is Faye and im 33yr old born with TOF /OA. I have my medical records and i was very late in devoloping in speech and walking. They told my mum it was bevause i was always unwell and had so many operations . I didnt walk until i was 3 and a half and my speech was delayed. I soon got over these problems .I used to get very upset and tearful , i think its due to feeling unwell most of the time. Im sure your little boy will be fine.
How is he doing now?
Faye xx

Hi all, thankyou for the replies.
Daniel is doing very well I think. He is three and a half now, and is able to eat pretty much what his sister does . He has some stress issues with food still, and is slow to eat independantly [he’d still rather I fed him] but I see progress all the time.
His speech is improving day by day, but his listening skills are still very poor, he is inclined to talk at you rather than take part in conversation, but he is affectionate and loving and very responsive most of the time. He engages in cuddles and looks for approval, so I am hopeful that as he matures he will catch up in all aspects of social development.
His Speech therapist is on maternity leave, and we seem to have fallen out of notice, but to be honest I am glad for a bit of peace and time to enjoy him rather than constantly feeling that people are scrutinizing him looking for things that aren’t ‘normal’. He is due to start nursery in Sept with a very experienced early years teacher, and I feel she will be the best person to tell me where he needs help, and then hopefully the speech therapist will help me provide that for him. He has had an incredibly stressful infanthood [even though he has been so very lucky with only a few procedures] and I am happy to let him enjoy these few months now being unstructured and playing with his twin and his older sister, and just having a more relaxed period in all our lives. Paed and STs are all very intent on him being in nursery, but I really feel he would have struggled going any earlier. He could not communicate, and had huge fear issues with strangers [small wonder after what most of them have done to him whenever he saw an unfamiliar face :(]When he goes now, after the advent of antibiotics, and a period of clear health, he will be toilet trained, eating successfully and talking, and I think that will make the whole experience much less frightening for him. His confidence is growing daily, which I love to see. He will still have a whole yr of nursery before starting school, and has developed good knowledge of shape, colours, counting, basic sorting etc at home.
I am still very much hoping that his delay is purely that , delay. I will still find it very hard if they determine there is ASD as well as he is a very special little boy, and has already had to be so brave in his little life.

H

I am so happy and relieved to say that Dan has now been signed off by his speech therapist :D
She is confident that his problems were because of general developmental delay because of his poor health rather than anything specific, and although he still scored below his age on her comprehension tests, she says he has made very appreciable progress and his use of general and social language has come on in leaps and bounds. She is leaving the referral open ended so I can get back in touch if we have any problems when he starts school, but I feel so much more confident now that he will be able to cope with school and make himself understood.