help and advice needed

hi all, my 7 yr old son has just been diagnosed with ASD, He has always been the way he is since he was tiny. I am finding myself questioning everything since i was told he has a mild form of autism. simple things like, have i said or done anything to trigger him, has something happened that i havent noticed? is anyone else having these thoughts as a parent? he is a lovely boy and is very bright but he is also a very sensitive boy too, alot of things stress and upset him daily. Its heartbreaking to see it and not always be able to help....please say im just being a normal mummy with these thoughts.

7 Replies

  • Hello. I have a 6 year-old grandson who was diagnosed with ASD when he was 3, and yes, you are being a normal mummy with those thoughts. Sudden noises, being cuddled, having his curly hair washed or brushed, being expected to eat things he didn't like the look or feel of, having to go somewhere different ... a million and one things it seems can trigger a reaction, which would range from scratching or biting the nearest person, to throwing anything anywhere, to sitting down in the middle of the road, and such strength! The diagnosis was a relief as we had all thought we must be really bad at parenting for him to do these things. He is much better now and even though he still doesn't like being touched unexpectedly he has built a trusting relationship with his (specialist) dentist and actually had a haircut in the barbers recently, as opposed to mum and dad snipping bits off when he was asleep! We have learned he needs routine and plenty of warning about changes, but not too far ahead or he'll worry about it till he's experienced it. If the unexpected happens, we have learned to (usually) recognise the signs of an impending meltdown and, if we're lucky, can distract him before it starts. We are all learning all the time how to help him make sense of his world and we are constantly amazed at the depth of his knowledge on things that interest him.

    Get all the help you can, but be prepared to have to push for it. If you're in the UK then The National Autistic Society has loads of info and your local doctor or social services can give you contact details for local support services. Good luck, be patient, keep your sense of humour, and keep telling your boy you love him and will look after him, just as any normal mummy does.

    Oh and if you need to offload, do what you've already done and write it down!

  • thank you so much for your reply, i was starting to feel like a bad mummy and questioning everything hardly slept for the last week or so trying to work things out. We have always made sure that we let our son know what is happening and if there are any changes to the routine. He seems to go through stages where he is really hard to calm down and keep from having a melt down and then other days he can be very quiet and with drawn not even wanting to talk to me ( he is very much a mummy's boy) he shuts down completely and it is hard to get through to him and find out what has happened to make him feel this way. I am hoping that once we get some advice and support that my head will settle and i wont blame myself for his meltdowns. Dont get me wrong i love my son to bits and i know that he will never change but i just want his life to be happy and for him to be as settled as he can be in his life. its nice to know that there are other people that feel the same.

  • Autism is another way of being human - there's nothing 'wrong' with your son other than the prejudices of society. Look up neurodiversity

  • I have a 17 yr old son with an asd diagnosis ... i haven't found the nhs in the least helpful. it is down to us alone to help them and it is hard. i'm not even sure that an autism diagnosis has any meaning. And for him it has been no help.

    one approach is to look for physical problems, exclude them. For example, is there anyone with thyroid problems in your family, auto imune issues like celiac disease? Does your son have a restricted diet, gut problems?

    My son's extreme anxiety turned out to co relate with very low ferritin levels, iron storage, he was pale and had dark circles under eyes and used to chew his clothes. He had severe constipation for years. There was and is clearly some major physical problem, but once u have an autism diagnosis the drs blame everything on anxiety instead of looking forbthe cause of the anxiety.

  • Hi, just wondered what you meant by thyroid problems and coeliac disease, I have underactive thyroid and my son's father has coeliac disease - are these linked to autism?

  • There are some studies which suggest a high proportion of autoimmune diseases in the families of ASDs. Thyroid disease in the mother has been linked with a higher risk of ASD in the child in some studies, it wouldn't apply to all children with ASD of course. There is quite a bit of discussion on the Thyroid UK forum if you want to search there - it's a v g forum. I have autoimmune thyroiditis too, though I was not diagnosed when pregnant with my son.

    It makes sense in that hypothyroidism is often associated with low nutrient levels because of its impact on the gut. Iron, B12, folate and D can all be on the low side, and iodine of course, and these are all essential for development. In a way, those who are undiagnosed in pregnancy might be at more risk. And of course hypot is associated with autoimmune gastritis quite strongly. Celiac in the mother from memory is a small additional risk in one study... again, low nutrients could explain this. Celiac as a risk in itself in the father I've never seen researched.

    That does not mean you or I are in any way responsible for our sons' conditions. But it may mean it is worth keeping an eye on their iron, b12 levels etc, and watching carefully in case they begin to show symptoms of an autoimmune disease. Symptoms seem to predate bloodwork by years, and antibodies can test negative at 15 but be there at 30.

    My neurotypical, exhausted daughter has just tested as insufficient in B12, for no obvious reason, and I am wondering whether she has autoimmune gastritis, and whether an inability to absorb or metabolise B12 might be at the root of my son's problems too.

  • Hi nothing you have done had made your son have ASD. It actually presents itself from the male line but it's no ones fault. My son wasn't diagnosed until he was 16 and during that time I was lucky to have some great support from Sure start, friends and his primary school. All I ever had from CAHMS that it was obviously my parenting skills esp as I'm a single parent so I know what it's like to think it's your fault. It's not. I'm sure you'Re a great mum and the fact that your worried shows that. I hope you've managed to get some support. I've only just seen your post as I'm New to this site. God bless.