3 yo ‘autistic traits’ or just behind ?

(17 Posts)
Dani2891 Mon 26-Feb-18 12:53:21

Hi everyone -

I have a son who turned 3 a couple of weeks ago. We were referred for speech and language January 2017 and didn’t see anyone until the October. He says lots of words but no conversation, there are issues with his overall level of communication. The speech therapist observed a few ‘red flags’ so made a referral to the child development team. Their waiting list is 12 months !
He doesn’t exhibit any major behavioural issues , doesn’t have to have things ‘as so’ ,doesn’t have any sensory issues, is very adaptable to change. He’s happy and healthy-fun and easy going - he attends nursery 2 days a week and they always tell me he’s had a great day. It’s really just the lack of communication and language causing concern with some lack of eye contact ( more so with strangers) .
With there being such a long wait to see anyone I’m looking at other options. I’m anxious to give him the right support he needs, the speech and language people have told me to keep doing what I’m doing but I feel this isn’t enough and waiting a year to see a specialist is wasted and lost time. The health visitors / doctors / speech therapist have all danced around what may or may not be wrong and suggested lots of different possible labels, which is no help to me or him really. It could be nothing , he could just be very behind - or it could be something on the spectrum, autism, global delay or any number of other things.
He’s becoming quite frustrated at times which is upsetting for him and all of us. I have a 4 yo who is so desperate for him to talk too so they can play proper games together. When I picked him up today from nursery I had a chat with his key worker about a woman I’ve found that is £70 an hour , I was going to have her observe him and give me feedback. I said to key worker that I just want someone to tell me what’s wrong and she said that in their experience as practitioners with children they are seeing autist traits they’ve seen before in children that have gone on to be formally diagnosed, so I almost feel she was sort of saying don’t waste your money -we think it’s autism.
I just don’t know what to do, I’m in tears daily so worried about him and the thought of things always being hard like this. I know it might sound silly but I can’t watch he undateables anymore it just has me in floods of tears- I find it absolutely heartbreaking the thought he may not lead a ‘normal’ life. We are waiting for a call to go to a drop in at the child development centre -he’s not due to be seen there until October for an assessment tho, I am on the list for portage to give us a call. Services as obviously so stretched down here ! And so many children are being reffered to warrant such long waiting lists!
Does anyone have any ideas they can share or similar experiences ?
Thanks in advance xxx

OP’s posts: |
Kleinzeit Mon 26-Feb-18 14:15:32

On the one hand, someone can't just observe him and tell you what's wrong. To tell whether he really has an ASC or not, and to figure out exactly what he can and can't do in his cmmuncation, he needs input from a range of different specialists (multi-disciplinary assessment) and that does take time to arrange. I'm afraid sitting on long waiting lists is a very common experience sad So what else would this £70 an hour lady be able to do for you? An observation would only tell you what the nursery already know - he is showing some potential signs - but would she be able to make some practical suggestions that would make your lives easier and lessen his frustration?

What you are doing is the right thing flowers. Your DS sounds happy and settled at nursery and they're aware of his issues and managing them OK. That's all very positive for him. And he is learning and developing all the time, even if his development is uneven. There is no "fix" for developmental delays or autism etc so keep trying to make it as easy as possible for your DS to communicate with you, and try to keep his frustration levels down. Take your time, use pictures and timetables and routines if that helps, help him and his brother play together in ways that they can both enjoy which might not be exactly the same games that his brother wants to play. Encourage them both to co-operate and take turns.

As for not leading a "normal" life... well who knows? Your DS may lead a happy productive life with autism or without. My DS has an autism spectrum condition, was diagnosed at six, and is leading a happy life at university now.

And don't forget to look after yourself too in all this.

Dani2891 Mon 26-Feb-18 16:12:22

Thanks for your reply it’s very helpful and has definitely made me feel a bit better today (maybe just having a low day)
This woman that I might get to see him would observe for 2 hours and then come to my house for an hour to talk about what her take on his development is and make suggestions . I’m actually really ticked off with her coz I’ve had an email saying she’d forgotten to mention she charges £40 an hour travel costs! She only doing a 20min journey from Torquay -I think it’s extortion and totally taking advance of people in our position.
I just want to do more for him and if I knew exactly what was wrong I’d probably be better at meeting his needs. My mums just been up and she’s convinced there’s nothing wrong he’s just behind and he’s far too young to be taking about this. More of an old school approach as back in her day no one would have said anything yet but early intervention is important so I suppose we’ll have to wait and see what The multidisciplinary team say - in 8 months 🙄
Anyway thanks again 😘

OP’s posts: |
Dani2891 Mon 26-Feb-18 18:31:32

I’m really torn about this woman coming -on principle about the cost 😬🤔🙄

OP’s posts: |
Kleinzeit Mon 26-Feb-18 19:11:03

It's a tricky one. How did you find her? Has she been recommended to you? Does she have good qualifications and experience?

Dani2891 Mon 26-Feb-18 19:27:17

www.autismhopeandfuture.co.uk

I just found her online -all sounds good and very experienced/qualified . Her full assessment is 10hrs / £700 😮😮😮

OP’s posts: |
Dani2891 Mon 26-Feb-18 19:29:21

I feel like she’d be the one to tell me if it’s autism and then I know what we’re facing . Or she might say it’s just delay-either way I’m so desperate to know. Got someone from devon child psychology caking me tomorrow afternoon so will see what they say before I make my mind up xxx

OP’s posts: |
EssexMummy123456 Mon 26-Feb-18 20:05:01

She looks like a highly experienced and qualified SALT, but whatever you decide you could look into a couple of things to do at home
the teachmetotalk website is really good, this book is also good Verbal Behvaiour Approach and so's this one Early Start

Dani2891 Mon 26-Feb-18 21:21:41

Thank you Essex mummy that’s really helpful -I have an amazon voucher to spend too so will get those now. 😘

OP’s posts: |
WineCheeseSleep Wed 28-Feb-18 00:10:34

Have you ever had his hearing and sight checked? My DS sounds a bit like yours and unknown to us he had issues with both for quite a while which we didn't realise until he was 3.5.

Vibe2018 Wed 28-Feb-18 03:51:05

If you go to your GP they might be able to give you the name of someone who does private assessments in your area. My GP referred my son on to a pyschologist that she was familar with who turned out to be very good.

Dani2891 Wed 28-Feb-18 11:59:07

Had hearing tested and all ok and no indication that there is any issues with his sight. I've actually just spoken to a woman from Devon children Psychology last night , she works for NHS specializing in under 5's and also does private work-she's calling back Friday to give me a run down of what she can offer.

OP’s posts: |
DuckWaddle Wed 28-Feb-18 14:55:07

I'm really sorry you're going through this. It's such a worrying time and takes such a long time to get an answer. Have they pin pointed where his development problems are? If he otherwise isn't showing signs of autism I would have thought that sounds positive.
My daughter had speech problems that caused me so much worry. I recognise so much of the pain you describe.She wasn't properly talking until 3.5/4. I actually ending up seeing a SALT privately as the waiting list was so long. I had a bad experience with one who assessed my daughter and was saying she had all sorts of problems. However, I saw two further ones (we moved and The first had no empathy) who disagreed with her. It's really hard. In our case the SALT made a huge difference for my daughter. They had said it was her speech rather than language though. Now she is doing so well and is top of her class. I used to worry for her future so much. I've no idea what caused her problems and it was a slow journey helping her. I recall coming back from nursery in tears as I longed so much to be able to communicate with her.
Sorry for the rambling! But I wanted to say I understand what you're going through, it's terrible you have such a long wait. In the meantime maybe start private SALT if you can. It made a huge difference for us

Dani2891 Thu 01-Mar-18 21:13:20

Thanks duckwaddle I’ll have a look into it. It’s the lack of speech and communication in general -no pointing and not a lot of joint attention -doesn’t always answer to his name and babbles a lot to himself (not directed at anyone) that’s it really what I’ve listed is the ‘red flags’ that have lead to the referral and talk of autism 🤔🙄😖

OP’s posts: |
hedgehoginthebag Tue 06-Mar-18 08:43:45

I read your thread and felt for you. I know that feeling. At the age of 3 my son had been in high end nursery care at a public school and i had wraparound care provided by a mother's help as i was working long hours. The nursery suggested my son was a problem as he bit other children sometimes for not clear reason to them and was angry and frustrated with some of the carers, refusing to take part in many activities. He would babble on talking about scooby doo, had a very short attention span and was referred for SALT. Yet at home my chld was perfect, loving and caring and great fun to be with - it was as if he was a different child when away from home. I got the idea the school thought I spent no time with him and that there was something iffy about my husband and i as if we were alcoholics/addicts or something. I sent my son to SALT privately, I sent him to a child psychologist privately and had his ears tested privately. They found nothing wrong. The public school gave me less than a days notice that they would not accept my son at the school as they felt he had too many 'problems' completely ignoring equalities legislation and refusing to meet me to discuss why they had given me such short notice. I had to give up my job to and I started to read everything I could about child development. Please read about gifted children. Please read about children and how that act when they are not happy in their childcare setting - they cannot tell you they are not happy as they don't know how to covey this. To bring my tale to an end after being told by a nursery / public school that they thought my child was possibly on the spectrum or ADHD - it turns out he is GIFTED and was completely unhappy with his childcare setting. He is now much older. He is incredibly bright but also incredibly immature and is an absolute clown because he gets bored so easily. So - please read everything you can about child development these are books and papers written by academics and not something you will find on social media. Get a pencil and underline the paragraphs that relate to your child's problems - you will be able to figure out what is going on for your self. Sending you a big hug and lots of resilience and luck.

Dani2891 Tue 06-Mar-18 21:57:55

Hi hedgehog -thank you for your reply and kind words. He seems very happy at nursery where he does 2 .5 days , the extra day he’ll be doing is up the road where they take them from 3 onwards -I think I’ll know pretty early on if he hates it there, even though he’s non verbal.
Are there any books /papers you’d recommend ? Many thanks x

OP’s posts: |
hedgehoginthebag Sat 10-Mar-18 15:03:02

Hi sorry slow reply I needed a moment to search my Amazon purchasing history. One book was: Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, Ocd, Asperger's, Depression, and Other Disorders by Webb, James T. This was REALLY good to help me understand my Child's brain development and how it can get advanced in some areas but immature in others. Another was:
Different Minds: Gifted Children with AD/HD, Asperger Syndrome, and Other Learning Deficits by Lovecky, Deirdre V. There was also : Asperger's Syndrome: A Guide for Parents and Professionals by
Attwood, Tony; and also: Parenting a Child with Asperger Syndrome: 200 Tips and Strategies, by Boyd, Brenda. Albeit after reading the first bok I realised my child had not got Asbergers - some of the strategies for 'refusal' were helpful. The best book for identifying that my child was reactive to food colouring was this: Fed Up: Understanding How Food Affects Your Child and What You Can Do About It, by Sue Dengate. I thought that it was twaddle until I took all the colours and bad additives out of our diet. I got a changed child within 48 hrs. xx

Join the discussion

To comment on this thread you need to create a Mumsnet account.

Join Mumsnet

Already have a Mumsnet account? Log in