DS is displaying ASD traits and I am freaking out

[mauvebadger]

DS who has just turned 3 doesn’t keep eye contact, repeats things from tv shows incessantly, doesnt respond to his name and doesn’t understand a lot of simple commands like “bring mummy your shoes”. There is other stuff but you get the picture, I can’t eat or sleep properly with worry as I feel like the life we had envisaged for our little boy won’t happen now and am terrified of the effect it will have on us as a family (I have an older boy who is 8).
Can anyone share their experiences as we haven’t even started the process of trying to get a diagnosis yet but feel now that I know what I’m looking for it’s so obvious and our lives are never going to be the same.
Thanks

He's only 3, those things don't necessarily mean he has ASC. Either way, I know it's scary and overwhelming but if he does your life won't be over just different. Ds was diagnosed 18 months ago at 9 and it's been a learning curve for all of us but he's a lovely, kind, bright boy who does well at school so don't worry yet about the future. At 3 your first step would be the GP or call your health visitor and ask for an ASQ SE to be done. From then on it works differently in each area but we were referred to a community paediatrician who then referred ds for assessment with a psychologist. It can be a long process, it took 2.5 years for ds and you will need support. Look on Facebook for support groups in your area.

Try not to worry. I was reading a jo frost book about toddlers and how they can show signs of adhd but changing little things in there environment can improve things!!

My little boy was 2 yrs 9 m when I first realise something wasn’t quite right with his development (speech and eye contact being the biggest issues). Like you I was heartbroken and very distressed. I went to his gp and asked a referral to a developmental paedatrician. The first request was turned down because ‘ middle class parent worry’. I then got the health visitor involved, as his speech was behind she referred him for a hearing test, eye test and speech therapist. The waiting list for speech was very long so I paid £150 for a private speech assessment which showed he has a speech disorder. I used this to return to the gp and got a referral to developmental paediatrician.

A year on my son has not got a formal diagnosis yet ( we’ve just had results back which rule out genetic issues) but he has a team of professionals supporting him. I’ll be honest the support isn’t much and we paid for fair bit of private speech therapy which has helped a bit. What has helped most is having a good supportive preschool and professional imput. No one is waiting to see if he grows out of it, they are putting support in place now.

I’m sure life will be harder for my son than I hoped. But now is a happy little boy who enjoys preschool and is progresssing. I’m not sure what his diagnosis will be probably high functioning asd and add.

The best advice I can offer is seek and fight for support, I found speech therapy helped a lot but it wasn’t ‘a cure’ which if I’m honest I hoped it would be. But it helped my son understand speech better and me understand how best to communicate with him.

Oh and come the sen boards there are lots of parents with much better knowledge than me there. It’s very supportive and kind.

Does he go to nursery or pre-school, and have the staff there raised any concerns about him?

My DS has autism, and was pretty much non-verbal at 3, apart from repeating back what I'd said to him, or a few phrases from the TV (echolalia), but since he was my first child the alarm bells hadn't really started ringing to be honest. It was the staff at his pre-school who picked up on his traits and gently raised them with me, and referred us to the early years intervention team to start the assessment process.

To cut a long story short, he received his formal diagnosis at 7, but now at nearly 12 he is a quirky, funny, loving, amazing boy, who has managed the transition to secondary really well (top of the top set academically and has just been nominated for an award).

If he does turn out to have autism, then yes, your lives may be different from how you were expecting them to be, but he will still be your gorgeous incredible boy no matter what.

Thank you for the replies, I made an appointment with my health visitor but it’s not til a week on tues so I think I’ll go to the gp as the sooner we get moving on this the better. I think it’s hit me so hard because I didn’t suspect it at all and was just googling the repeating tv shows thing but when asd symptoms came up it all seemed to make sense. DH and I just feel a bit like the rug has been pulled out from under us.
Thanks again for replying, really appreciate it.

Thank you LostInLeics although you’ve set me off blubbing again!

Soulcakequack- excuse my Mumsnet ignorance but how do I get on the SEN boards?

Don't delay getting some support - you may find it very reassuring. If it is ASC, diagnosis often takes years, it is a spectrum condition and early support can really help your understanding, family quality of life, in school support and your child's development.

One of the first points of referral is often speech and language. Often met with crys of but we don't have a speech or language issue. Therapists can be brilliant at teaching us little games to play with our DC that broaden their understanding and encourage their development. The area I'm in, offer special parent and me sessions for children who are developing possibly at a different rate. Its quite interesting and again reassuring to see other toddlers/ young DC and a whole range of behaviours. Rather than just reading about those who wonder which novel their DC should move on to next as a pre-schooler.

Three year olds often enjoy the control of not following instructions. Does the question would you like an icecream/ sweets get the same reaction as get mums shoes?

I find that giving a small amount of control helps so if we're going to the park the control is do you want the red coat or the blue coat, or trainers or wellies today?

Assuming you're UK support is available, but slow, so start the ball rolling phone your health visitor and ask whether support is via them or gp and which ever way this goes your boy is still your little boy.

Mauvebadger - if you go to the main talk directory and scroll down there is a sen section. With in that are sen boards - I’d try chat or children. They have been a huge support for me.

I’m sahm at the moment but used to been a early years teacher. I also have a masters in child development. I knew my son’s speech was a bit behind but it wasn’t until I watched him at a preschool show that realised there was a problem. Sometimes it’s hard to see xxx

Hi. I have had many nights of worry myself regarding my daughters development. She is only just 2 but displayed many ASD traits herself. I think I first became concerned when she stopped trying to babble simple words along with not waving etc... Obvious regression from about 14 months. When I spoke to the health visitors they arranged to come and see my daughter and complete the questionnaire other op mentioned. It was then that I realised her social / problem solving skills were not reflecting her age. It is difficult because I then found myself looking for traits such as walking on her tip toes , hand flapping etc... Traits that many toddlers display but just having that worry in the back of your mind does heighten your feelings. I found myself at breaking point a few months ago just not knowing either way but I'm starting to feel a little more optimistic now. Speech and language private is expensive but it has enabled her to learn some makaton - this has been great as she can express when she's wants more of something. I had my first paediatrician appointment last week and now have one booked in for six months time. At the moment my paediatrician has put it down to a speech delay but I really don't think that is the case. I think that can be half the problem with diagnosis taking so long.
Be kind to yourself op and enjoy ds you are taking all of the neccesary steps to get support. X

please get some support. It isn't a death sentence xx

It’s such a worrying time, I remember it well. But you will be fine, your family will adapt. The SEN boards are brilliant for a hand hold through the diagnostic process. Get over there!

Thanks again everyone, nice to know we're not alone.

It sounds like my dd at that age who was later diagnosed with ASD. You may habe to wait a long time if it is relatively mild. My dd was showing signs at 3 but considered low end of normal, so did not get diagnosis until she was 5. I wish we'd known sooner so we could have adjusted our expectations and not compared her to what she should be doing at that age. Dh and I both felt to blame so it was an immense relief to have a diagnosis.

I'd read up on it and learn some strategies for dealing with any difficult behaviour. Even if she doesn't have asd it's still useful.

youre definitely not alone.

I would personally advise that you ask your GP or HV if there is a specialist SEN health visitor and get advice from them as to what to do next if you think he might need a referral. I actually found the process easier and smoother at this age than I did with the whole waiting till theyre at school and going down the education/referral that way route, but obviously that relies on you being pretty astute and aware and recognising signs early, but I guess that could differ from area to area and be according to what professional you are involved with, but really, I do think that early intervention is key. I know you feel scared, but there is support out there and if you can access it, it will help so much with how he manages at school, and with his friendships etc x

I am in a very similar situation except my son is 19 months old. He was premature and has a variety of issues but he was doing well developmentally until about six weeks ago when things changed completely and he’s like a different child. He’s stopped playing with toys, won’t engage with anything, stopped clapping or mimicking things, isn’t as vocal, all he does is walk up and down the room, chewing on something and eat anything he can find on the floor.

I am so worried about him, I don’t understand what is happening at all. He was already under a paediatrician who we saw this week and she has made a referral but I have no idea how long it will take to see them and what will happen.

Definitely push for some help, I hope things work out well for you all

Thanks everyone. I can't see any way that he's not got a spectrum disorder because he has so many symptoms. I think that's what I'm struggling most with because every time he recites an episode of hey dugee word for word or doesn't want hugged and screams and pushes me away it breaks my heart.

Mauvebadger - in terms of future speech the echolia (reciting things) is a really helpful sign.

Not wanting to be hugged is hugely hard but I promise with support you will find ways that help you connect with your boy.

@mauvebadger I'm not sure if this link will work but it's a video by a man with Autism for parents of children with Autism that is very reassuring and supportive. I found it reassuring anyway I hope it helps you

www.facebook.com/aspergersfromtheinside/videos/1793300580979057/

Thanks I'll watch it later. DS is marauding about just now and if he sees the phone he'll want to watch youtube so I'm hiding! Still feel like its a bit of a bad dream and that all my hopes and plans for the future are in jeopardy. It will get better right? Xx

I would say try and take each appointment as it comes. My son has dyspraxia and had unintelligible speech until he was five. He was diagnosed with autism at 11. It was a long road. He is now doing really well in school, especially at maths which is a bit of a cliche. I would also take any opportunities offered to you in the way of autism parenting classes or groups as it is really helpful to meet other parents in the same boat even if you don't find the course itself particularly useful.

Yes my life is different. I am not able to work at the moment. I have a teen who doesn't go out with friends and can't really go out without me although he has people he's friendly with at school and he participates in some clubs. But it's also not terrible. DS can be funny and helpful. I don't have to worry about drugs or alcohol as DS is very rule driven and would not dream of touching anything like that.

Most of all be kind to yourself.