Looking for some support...

Hi there,

Your little boy sounds alot like mine, apart from the head banging thing. He does the same things as your son. He is currently undergoing autism assessment on the umbrella pathway. When he went to kindergarten he was assessed by the early years service who got him a place at a nursery assessment centre at a special school. Their assessment was that he qualified for a special school place and he is now having a wonderful time in reception.

I think my son has high functioning autism, which brings positives as well as negatives. He has an amazing memory and capacity for learning and is generally a lovely little boy. However, he finds changes in routine difficult and has regular tantrums and melt downs. It can be very difficult to get him to do alot of things, which is very stressful for me. However, I refuse to see him as defective as there is a huge variety of personality types and abilities. Yes, he may have meltdowns and struggle to communicate, but who is to say he is worse off than a so called normal child? Normal people have all kinds of problems such as gambling addiction, alcoholism, cancer, cystic fibrosis, etc, etc. Things that our boys may be fortunate enough to never experience.

My point is, there is no 'normal', in the grand scheme of things we can't conclude that one person is better off than another. There is a huge list of autistic people who have contributed to society, such as Greta Thurnberg, Albert Einstein, Chris Packham, probably Issac Newton and a great many others.

It's important to focus on the positives, rather than the negatives and to avoid comparing our children with so-called 'normal' children.

Thank you so much for replying. I really like your optimistic way of viewing it. I'm trying my best to also see it in this way - but it's tough at times :-( The main thing that's upsetting me atm is the thought that I might never have a conversation with him if he doesn't develop speech. Do you mind me asking if your little boy had language at aged 2 (26 months to be exact!) - and if not when he started developing it? Just trying to work out if no language now means it's unlikely to ever develop. He definitely communicates - just not verbally if that makes sense. 

No, my little fella wasn't talking at 26 months which is what prompted the health visitor to refer us to the speech and language therapist. He is 4 and a half now and is still not capable of a verbal conversation. His progress has been slow however he has made HUGE progress. His first form of speech was exclusively echolalia, which is repeating words and phrases from TV shows, videos, and other people's speech. However, he will now use a few words to communicate, such as 'No', 'Do you like Mommy's phone?' (which means he wants to play on my phone!) and 'watch Gruffalo'. He has improved a lot with his back and forth interaction, but he is still a long way behind typical 4 year olds. Our speech and language therapist gave us a list of exercises to do at home with him to improve his listening and attention skills and help him understand us better. I once read that an autism diagnosis is not an end result, but rather a starting point to help them develop skills and the younger you start, the better. With help and encouragement ASD kids are capable of improving their abilities. By the way, the umbrella pathway is an autism diagnosis process involving a team of professionals such as teachers, speech therapists, paediatricians, etc. It can take about a year to complete. Our paediatrician referred us for this. She has not given us a diagnosis herself as she says our son is still young and developing and kids can change a lot in a short space of time.

I feel for you as newborns and special-needs children are difficult to manage independently, never mind together! Sibling jealousy is something so-called 'normal' kids struggle with. Apparently when my brother was born my 2-year old self used to pull his dummy out and smack him in the tummy! My younger brothers fought for years because of it, but they are grown up and get on well now! 

At my son's school I see some kids wearing a padded, fabric helmet to protect them when headbanging. Not sure where they are from but special needs shops online probably sell them. My son gets Disability Living Allowance to cover special needs expenses. We asked his speech therapist to fill out the part where a professional needs to comment. But that could be a paediatrician, or health visitor as well. When filling out the form you will need to emphasize his difficulties and point out all the extra help he needs time and money wise. This might be painful for you, but it's what you need to do to get accepted. You can say you need the support of another person to manage, even if it's just a relative or friend. 

One of the most important things for autism moms is to find ways to manage stress. Even if it means taking a bit of time out for yourself, don't feel guilty as you need to recharge your batteries in order to have the energy to look after your family. 

Lying awake stressing that my LO’s heading banging is going to be doing permanent damage :-( it was quite bad today and we have hard floors (also does it on the walls). Feel awful as we’d reached a point where it wasn’t really happening anymore, so long as I avoided the situations that distressed him. But obviously can’t avoid my newborn. So it’s re-emerged with a vengeance and I’m blaming myself. Any ideas re how to manage? I’d initially been reacting - picking him up if he started, giving him a cuddle etc. But I’ve recently started trying ignoring the behaviour and just trying to explain to him why I have to pick up/feed the baby (it’s almost always related to the baby making a sound atm). I’m sure there’s a lot of jealousy going on (as well as disliking the noise of a baby crying), as I’m still breastfeeding my 2 year old- and prior to the baby coming along he had unlimited access - whereas I’ve had to put some boundaries in place now. Which of course I also feel bad about

Thank you so much - all of this is so  reassuring to hear. And you're so right about others being ignorant and therefore ill equipped to judge; I think I just need to have more confidence in my own convictions about what's best for him (and grow a thick skin!). 

I also agree that finding playgroup etc. difficult might relate to noise/brightness etc. (as well as the social elements). I've bought him a pair of ear defenders but he's refusing to try them on at the moment and I'm not sure how to explain what they do! I've been wearing them to try and encourage him, as I'm sure he'd love them if he realised what they did! A big problem at the moment is that I have a newborn and my 2 year old head bangs every time he cries (I assume this is partly the noise, and partly him communicating that he doesn't like the attention the baby gets as a result of crying). Very tricky to manage. 

Thank you so much - all of this is so  reassuring to hear. And you're so right about others being ignorant and therefore ill equipped to judge; I think I just need to have more confidence in my own convictions about what's best for him (and grow a thick skin!). 

I also agree that finding playgroup etc. difficult might relate to noise/brightness etc. (as well as the social elements). I've bought him a pair of ear defenders but he's refusing to try them on at the moment and I'm not sure how to explain what they do! I've been wearing them to try and encourage him, as I'm sure he'd love them if he realised what they did! A big problem at the moment is that I have a newborn and my 2 year old head bangs every time he cries (I assume this is partly the noise, and partly him communicating that he doesn't like the attention the baby gets as a result of crying). Very tricky to manage. 

I feel for you as newborns and special-needs children are difficult to manage independently, never mind together! Sibling jealousy is something so-called 'normal' kids struggle with. Apparently when my brother was born my 2-year old self used to pull his dummy out and smack him in the tummy! My younger brothers fought for years because of it, but they are grown up and get on well now! 

At my son's school I see some kids wearing a padded, fabric helmet to protect them when headbanging. Not sure where they are from but special needs shops online probably sell them. My son gets Disability Living Allowance to cover special needs expenses. We asked his speech therapist to fill out the part where a professional needs to comment. But that could be a paediatrician, or health visitor as well. When filling out the form you will need to emphasize his difficulties and point out all the extra help he needs time and money wise. This might be painful for you, but it's what you need to do to get accepted. You can say you need the support of another person to manage, even if it's just a relative or friend. 

One of the most important things for autism moms is to find ways to manage stress. Even if it means taking a bit of time out for yourself, don't feel guilty as you need to recharge your batteries in order to have the energy to look after your family. 

Lying awake stressing that my LO’s heading banging is going to be doing permanent damage :-( it was quite bad today and we have hard floors (also does it on the walls). Feel awful as we’d reached a point where it wasn’t really happening anymore, so long as I avoided the situations that distressed him. But obviously can’t avoid my newborn. So it’s re-emerged with a vengeance and I’m blaming myself. Any ideas re how to manage? I’d initially been reacting - picking him up if he started, giving him a cuddle etc. But I’ve recently started trying ignoring the behaviour and just trying to explain to him why I have to pick up/feed the baby (it’s almost always related to the baby making a sound atm). I’m sure there’s a lot of jealousy going on (as well as disliking the noise of a baby crying), as I’m still breastfeeding my 2 year old- and prior to the baby coming along he had unlimited access - whereas I’ve had to put some boundaries in place now. Which of course I also feel bad about