Autism...?

[goldnugget19]

Hey all, need some advice as I think my DS might be autistic. Any advice will be greatly appreciated.

He's 21 months old and currently knows two words (mummmmmum and daddddaaa). He isn't pointing at things yet, and I find it really difficult to play and engage with him. He enjoys pushing his fire engines along the floor, but I can't say I've seen him engage in imaginative play. Sometimes he will turn when he hears his name, but other times he won't. Since the age of one he has developed a habit of head-banging, which he does repeatedly when having a tantrum or just being told no. It's got to the point now where he will actively seek out a wall or area of the floor to bang his head against. We have hard floor through-out our downstairs, and he will even do it on concrete pavements and brick walls. Quite often there'll be a bruise on his forehead from it.

I'm really worried about him, and feeling a tad alone. The GP has referred to a paediatrician, but this referral was rejected. We are on the waiting list for a speech and language therapist. We are also on the waiting list for an appointment in paediatric audiology to have his hearing checked. All this time, his self-injurious behaving seems to be getting more frequent, and it's clear he's getting really frustrated.

I'd be relieved to hear of any similar experiences? Thanks all

Going through this with my son, so appreciate how hard and frustrating it can be. We got referred across at 21 months. Are you in England? Contact your health visitor with concerns and ask to bring 2 year check forward. Sounds as if GP hasn't written referral in a detailed enough way for your son to be evaluated.

For me, it isn't about my son being diagnosed or evaluated it is the support that the process brings.

Does your son wave? Clap? Copy or imitate your actions?

Also try the MCHAT autism screening tool online. If this comes out high also mentioned to GP and health visitor.

@Lifeandlemons
Yes we are in England.
I spoke to our health visitor yesterday and they are coming to see us on the 12th August as that was the earliest they could do. Not sure if that's for the two year check, but probably will be. The HV recommended Portage...? I've Googled it and sent them an email, so hoping something will come of that.

He's only just learnt to clap in the last 4 weeks or so, and it's hit and miss as to wether he'll do it or not. Same with waving, he'll only wave back less than half the time. Other than when we are trying to encourage him to wave or clap, I've never known him to copy anything he sees us doing. He just seems quite happy in his own little world.

Another one of my concerns that I forgot to mention is that he seems to like putting non-edible things in his mouth. Is this normal? He'll chew pebbles, rip off pieces of foam from packaging, try and eat sand from his sand pit. I'll often see him chewing down on his comfort blanket too. As I type this he is currently trying to eat the soft part of some headphones. He's my only child so got nothing to compare this to.

Thank you, it's reassuring to hear that someone has had similar experiences. I'll look for the MCHAT tool online thank you.

Our health visitor had to refer to portage and the early years team and they have been excellent but waiting list was long.

There's a long wait at speech and language too so we have had a few private sessions.

My little one loves to put things in his mouth too! He's a nightmare. Portage recommended a chewy toy. I bought the ARK toy from Amazon in a P/ Q shape which has been good.

My 4 year old has ASD.

I raised concerns with the HV who made referrals to SALT and for a hearing test. SALT where the ones who referred to a paed and put him on the autism pathway. They were also the ones that referred us to portage. (Fantastic service btw).

To help encourage communication for now and ease frustration have a look into visual aids. Objects of reference and PECS. We started this before we were able to see SALT and they then helped to continue the process and guide me on further steps. We also used Makaton, starting with signs for more, again, yes, no and finished.

While you wait for Speech Therapy I would recommend buying the Hanen More Than Words book if you can afford it. It really helped us with our son, to understand where he was with his communication and what we needed to do to help him move to the next stage. My son is autistic. Yours may or may not be but even if he is not the Hanen tips will definitely still help.

Hey all thanks so much for the suggestions. Really pleased to hear Portage is an excellent service, really hope someone gets back to me soon.
@OatyBarKid What's PECS? I've never heard of that before. The HV has sent us some laminated picture cards to use in the mean time so I'm going to try them with him today and see how we get on. I'll try anything to help him feel less frustrated.
@MistyFrequencies thank you for the book recommendation, I'll take a look.

Hi op,
Currently going through the same, although my child is older.
I have to say one thing that has made a massive difference to my LO already is nursery. Just a couple days a week and the difference is amazing!
Is your LO currently in nursery?

Even though we knew deep down something was going on when we were told it was highly possible it hit us hard, few weeks later we're fine and just trying to get him all the support he needs.

My LO didn't do very well at all with his 2 year check but fast forward 5 months he's started gaining the skills.

I'm pleased your HV is coming out, ours done an amazing referral for us and has helped us out a lot. Fingers crossed your HV does the same.
Sending love

@goldnugget19 PECS stands for Picture exchange communication system. Basically the cards the HV has sent you. Visual aids to help communication. There's several steps to it, but it starts with the child recognising that they can give you a picture and receive what they need/want.

I've just done the M-CHAT-R assessment tool online and he has come out as high risk. Will get this forwarded onto GP and HV.
@Cocomade no he's never been to nursery as me & my husband work opposite shifts. To help his development we have been looking into it and have booked a trial day at a local nursery for Wednesday next week. Really good to hear that made a massive difference for you.
@OatyBarKid thanks! I'll try them today. HV just sent them out and didn't explain what they were for or how to us.
Thanks everyone. Did anyone find that early intervention with autism made a positive difference?

Also did anyone find it difficult to get professional diagnosis of autism? I'm confident something's not right but the paediatrician has already fobbed us off once and I'm a tad concerned they'll do the same again.

My son has had really early intervention, he was diagnosed at age 28 months, and I'm lucky enough to be able to pay privately (wait-list in Ireland where I am is years) for Speech Therapy- he went from maybe 15 words total at 28 months to just yesterday (34 months) telling me "I no like go park" "I want weetabix" etc . It's made a huge difference. I have a friend who is an Occupational Therapist and her tips /advice has made a huge difference to his sensory seeking too. Big fan of early intervention here.
I would read up on PECs before implementing to be honest. Very controversial in the world of autistic adults as some feel that it's ABA roots make it harmful. I'm all for doing whatever works for your kid and if that's PECs great but best to be fully informed.

Hope his trial day goes well!
First couple of weeks are tough I won't lie, he didnt always want to go in but after 3 weeks he went running in.
Nursery can also do a lot to help, they can get funding to get specialised workers in to have 121 with DC. This is worth asking!

The GP has referred to a paediatrician, but this referral was rejected.

Push again, OP. DH is a GP and his referrals for his patients get rejected frequently for all sorts of non-clinical reasons. The thing is, he calls up the clinic he's referred to and finds out why and re-refers. He doesn't just sit back and accept his patients' rejected referrals. It's likely your GP did not tick the right box somewhere along the line. Your GP needs to re-refer! Paediatrics is your way forward because it plugs you into S&L, hearing, etc. It all should come under paediatrics.

You must change GPs if you're being fobbed off. This is your child. Push hard to the point of complaint. Step on toes, be the squeaky wheel and do this for you! Because as the mother of an autistic child myself, getting a diagnosis was like being able to finally exhale. It really helped both DH and I parent our autistic child in the way he needs to be parented. It helped us, as a whole family, learn how to communicate with him. He's in a mainstream school with teachers who totally understand his needs. It's like being a card-carrying member of an 'Understand Me Better' club in a world not shaped for neurodiverse people (but we are getting better at being more accommodating).

@goldnugget19

Also did anyone find it difficult to get professional diagnosis of autism? I'm confident something's not right but the paediatrician has already fobbed us off once and I'm a tad concerned they'll do the same again.

We self referred to NHS SLT and they’ve initiated the diagnosis process from there.

I did the self referral after DD passed her 2 year check, with just a suggested “observe” for her speech. I knew there was something off though- her speech was delayed, but she just seemed to be tuned into a different channel than the rest of us.

We’re still waiting on a diagnosis or anything meaningful NHS help 18 months later thanks to Covid- dd is now 3.5.

I got in touch with a private SLT which was a massive help for me as a mum- she made me see that regardless of the possibility of a diagnosis, the more urgent concern was helping dd with her communication. She was also able to give me a steer on whether or not she thought dd would benefit from mainstream or special school based on her engagement with her, tips for potty training and just a soundboard for me and my general Oh-Fuck-She-Has-Autism-Doesn’t-She worries. She’s point out things like how her pretend play was actually very good, and how she picked up new concepts quickly, which boosted my confidence and made me start feeling really positive. We had about 8 sessions over about 9 months at £60 a go, and it was worthwhile for that support.

Even without a diagnosis or regular speech therapy, dd has come on massively. Using more words every day, starting to put 2 together, was a breeze to potty training without having to implement any picture exchange. She used to put absolutely everything in her mouth, and that’s tapered off hugely. She’s more engaged, wants us involved in the things she’s doing or watching much more.

The best thing we did was put her in nursery for 3 full days a week- I spoke to them about her speech issues, probable Asd before she started and they were totally unphased. She’s settled in really well and now she’s mixing with other kids her own age we’ve seen a language explosion over the last few weeks. She’s starting mainstream nursery this September and was so excited to try on her uniform and backpack.

I just wanted to say all this because I’ve been where you are and it’s scary and lonely with all the uncertainty. But even if it is ASD, that won’t stop your boy learning, developing and succeeding.

Thanks @TheVanguardSix we certainly will do. I'm at work tomorrow but I've asked my husband to ring up to speak to a GP again and let them know of the M-CHAT results. I've told him (he was in complete agreeance) not to take no for an answer, although I think the GP's are happy to refer, it's just the paediatrician that won't see him. Feels like we've got to smash through some form of metaphorical brick wall to get them to see him. I'm worried that if we don't intervene soon enough it'll somehow make things harder for him in the future. I want nothing more than for him to get the support he needs and to be able to feel he is understood. I'm perhaps wondering if private is the way to go instead...
@TerribleCustomerCervix thank you so much, feel better knowing we're not alone.
Bit more of an emotional question now but I've just got to ask... before we considered he might be autistic, I felt like a terrible parent. Like his lack of development was my fault. I couldn't help but wonder things like 'if I'd played with him more would he be further developed?' 'If we'd put him in nursery from the day I went back to work after maternity would things be different?', or 'If I'd told him off for the head banging from day 1 would he still be trying to hurt himself like that?' Now I know Autism isn't caused by bad parenting, but all these things crossed my mind before I looked into Autism. Did anyone else have these thoughts / feelings? Until recently they've eaten me up inside...

I had those feelings op.
I would be researching autism on a night and cry thinking I'd done everything wrong and it was my fault.
It wasn't until I broke down to my HV that I realised I done everything I could and it was out of my hands.
Once you have the support in place not only for your DC but yourself you feel a lot better.

Songs for Littles on Youtube might help him in the mean time while you're waiting for the speech therapist referral.
It's run by ChatterboxNYC which is a speech therapy office. I don't think my DS has autism but he certainly has a speech delay and this channel has really helped. Hope you don't have to wait too long for your referrals! 💐

Also did anyone find it difficult to get professional diagnosis of autism? I'm confident something's not right but the paediatrician has already fobbed us off once and I'm a tad concerned they'll do the same again.

There are massive waiting lists in most of the country.
However, the Paediatrician hasn't fobbed you off - you haven't seen them. The people who received the referral and looked at the information the GP put has decided that there wasn't enough evidence there to accept the referral. That is a very different thing. With the greatest respect, GPs have to have 'some knowledge' of a vast array of things. They are not experts in development of 21 month olds and they are not experts in knowing what particular things the triage at the CDC / CAMHS / or wherever the Paediatricians hang out in your authority are looking for.

The HV should be able to do a more specific job, as would the Portage Team member, as would a Nursery SENCo. Because they work with 0 - 5 yr olds all day long and recognise when there are enough differences from what is expected, that they thing a Paediatrician ought to have a closer look.

In our area you can't have Portage if your child is a Nursery. Portage is essential home teaching. Where I live you have a specialist teacher come out to your house once a fortnight and they play with the child and offer you suggestions and advice as to what you might try. They also make referrals to anyone that can support you or help assess your child. Brilliant service BUT, like everything in the world of SEND, big waiting list.

OP reassure yourself that it's NOT your parenting by thinking about identical twins who have the same parents, one autistic, one not. It happens. Also I have more than one child and only my son is autistic. It's really not your parenting at all. You sound really caring and proactive and he will do well because of that.

Hi 👋

It might be to do with his age that it was rejected, your 2 year HV review might be a good catalyst.

We started to identify traits in our son from about 16 months. Similar to you, no pointing, mirroring, name recognition, very specific play patterns - tons of stuff really.

We were fobbed off by HV and told waiting list was 2 years. We decided to get a private diagnosis (I know this isn't possible for all) this happened at 24 months.

After we had this, it seemed to accelerate pit access to all these services on NHS. Portage started coming to the house, we met with occupational therapy, speech and language, did lots of courses... And we've just had out nhs diagnosis. This happened in 5 months which is really fast.

I would say definately ask to be referred again. Look up the criteria again so when you give examples they are aligned to what they look for, for us it was across

Social interaction
Reptitive behaviours
Communication and play

Best of luck with it all. It is a scary time but the more information you have the better you can support your child. But it's certainly a cocktail of emotion ❤️

Bit more of an emotional question now but I've just got to ask... before we considered he might be autistic, I felt like a terrible parent. Like his lack of development was my fault. I couldn't help but wonder things like 'if I'd played with him more would he be further developed?' 'If we'd put him in nursery from the day I went back to work after maternity would things be different?'

I think it’s a rite of passage to go through that thought process- although I knew that ASD was genetic, I’d wonder if I’d done anything in pregnancy, to cause dd’s brain to develop differently. What helped me is acknowledging that DH and I both have neurodivergent traits ourselves, as well as a lot of neurodivergency (both undiagnosed and diagnosed) on each branch of our families.

So all the flash cards, Mum and Toddler Groups and Jo Jingles sessions in the world wouldn’t have changed anything.

When DD has made progress it’s because she’s ready to, it’s not anything that we’ve done!

She’s recently started saying “cheek of you!” incredulously when DH or I tell her off or ask her to even mildly inconvenience herself. If you’d told me she was using language like that when she was your DS’s age I just wouldn’t have believed you.

Be kind to yourself- it’s easy for the worry to totally take over. I was at a point it was all I could think about- I eventually got prescribed anxiety medication and it was then that I could look at things more objectively and less doom-filled.

@TerribleCustomerCervix

I know this message wasn't for me but can I just say thank you. I'm at that "I can't imagine my son will ever say a word" stage and I try to be patient but hard not to get despondent sometimes xxx

[quote doadeer]@TerribleCustomerCervix

I know this message wasn't for me but can I just say thank you. I'm at that "I can't imagine my son will ever say a word" stage and I try to be patient but hard not to get despondent sometimes xxx [/quote]
No worries.

I try to be really positive about DD’s strengths and how far she’s come, because when I was I initially worried about ASD it was hard to find much in the way of any positivity!

I just wanted someone to tell me she’d be ok, with or without autism.

Ds got Refered by health visitor. When he was 2.5 due to being behinde development wise . He did not walk till he was 20 months and did not talk till he was around 4. He made sounds but he seemed to talk like a cave man. He went to portage they were very nice. He also had his hearing checked. He also went to salt . It took quite a while but he got diagnosed a few months back so took around 3 years for diagnosis. Hopefully your health visitor will be able to help you get referred.

I don't have much to add beyond the great advice already given but I was in your position and I remember being so worried and just wanting someone to tell me everything would be ok.

My son is autistic and was diagnosed at just over 2 years old. He is now 3 and still doesn't talk, but is making new attempts at words every day and most importantly is so much more engaged and sociable than he was a year ago and he enjoys interacting with us.

We had Portage (great) and SALT, but the waiting lists were long so we paid for some private early intervention even before we had a diagnosis and it really helped to teach us how to play with him and get him interested in engaging with the world a bit more. The Hanen book is also so useful.

Keep pushing the GP and the health visitor (2 year scores really helped our case) but it sounds like you are already on the right waiting lists for SALT etc.

It's impossible not to worry, but I just wanted to say that it is ok. Our family is happy and our son is wonderful.