3 year old currently being tested... Am I coming or going???

My little boy is currently witing to be tested for autism... Me and my partner are currently pulling our hair out with little support at all! The preschool get notified of someone coming to visit before we do and the school cant tell us from which department this person is coming because they don't actually know!!! My little boy is 3 and cannot communicate at all. He will just echo us and I have no idea of he actually understands us! We keep bringing this up to many professionals but its almost like they don't understand... They dont offer us help or give us suggestions of what might be affecting him.

We have been pushing for this since he was 1 and I'm heartbroken because my little boy cannot communicate with me, he knows colours and numbers and can point to various parts of his body. But yet nothing else which ends up in meltdowns... Does anyone have any similar experiences? I feel 

Hi I'm new to this so I'm just going to rant and pray that someone, anyone understands.

My little boy is called Blake. He was extended breech, born by c-section and only slept on daddy. He couldn't crawl, but took to walking, could do eye contact but hated the hoover. Prefered to play alone and he only ever said one word nouns when he was meant to be talking properly. We knew something wasnt right but got told 'wait and see.' We were then referred to speech and language at two. (He hasnt seen them for 6 months.)

Blake is now 3. He is happy and oh so smart. He can count up to 20, identify numbers, colours and has mastered nouns and echoing like a pro. But... He cant tell us how his day is, what he did at preschool, what he wants for dinner or christmas. I'm not even sure if he knows what christmas, or dinner is... To be honest, I'm not sure if he can understand what I'm telling him. I've brought this up to many professionals and I get brushed off. Have you had that? SENCO and Cams (sorry bit rusty) are coming to test him but when? God only knows.

Blake has major meltdowns where Mummy (me) isnt allowed to touch him. It's daddy. Daddy this... daddy that. All i get is freaking bedtime and I look around my house, or when Daddy and Blake are interacting and I go 'Where do I fit in all of this?' I'm envious of my own partner
... Hell I'm envious of parents I dont even know who get a response from there child even if its snarky. I am such a terrible person. Or is that normal?

Is it normal for someone with suspected autism to not talk or have major delays? Is it normal to feel so damn isolated? Is it normal for me as a parent to be envious of others? To wish for my child just to be communicative just for an hour? To cry because I have no idea where I went wrong or what the future will be like? I know compared to most people I must have it pretty easy. But right now it doesn't feel easy at all.  I have no support and absolutely no-one to answer these stupid questions. But if anyone out there knows if my son can understand me. How to help him with language. If this language barrier is a certain aspect of autism. Or even of you feel like you are like me. A parent who is on the outside looking in, tredding the waters of the unknown. A kind word or two word really go far.

Em x

  • Hello again, Interaction can be difficult with any child with Autism no  matter where they are on the spectrum. He will do this on his own terms. Patience and perseverance is key. As well as understanding how Autism affects interaction. I dont know if you are aware but you can do an online Autism awareness course with the center of excellence. This course is £139 but if you have a wowcher login you can get it for £29 pounds. I did it and it is an amazing course. Im sorry i dont seem too helpful on this but every child with Autism is different and the level of contact you have with blake will change at some point. You are not selfish at all and i understand your need  to spend time with Blake.

  • What your feeling is totally normal.  

    My Sons first six months of his life he cried incessantly unless he was with me or his Dad.

    18months he wasn't talking like his peers.  So we went to speech therapy..  via his health visitor.  

    Can you contact speech & language .Even if he isn't understanding language at the moment.

     He may talk later or learn alternative communication skills in the meantime.  The sooner the better.

    I ended up begging my GP for an assessment.  Eventually around two he got a diagnosis.

    It may be Autisim that has caused his echolia or delayed speech.  Doesn't have to be.  

    One of my relatives had similar problems to your Son,isn't Autistic but was able to catch up with peers after being sent to a special School then mainstream primary School.

    We have Kids & map out their lives it's what parents do.  Its normal to be upset if you see your child struggle when compared to his peers.  

    Isolation & anxs normal.  My Son is 20 now.  Realistically looking back not every stress we experienced was due to his Autism.  

    Can relate to sometimes envying other parents.  But you will have positive times aswell.

    The assessment will also take into consideration what you tell experts about your Son.

    Maybe helpful to write down things he does that you feel are not meeting his developmental stages.  Or are different from his peers.

    kind Regards

    Star

  • Huge hugs thankyou xxx We have a paediatriciam but not sure if thats a community one... She referred us to senco and cahms. We are waiting for speech and language to go see him Since he changed schools and is currently waiting for the end of autumn term to be seen! We keep knocking doors and nobody answers. 

    Xx

  • Thankyou Stan. You have not only validated my feelings but answeted most the questions our paedatriction wouldnt/couldn't. Its hard to identify a meyhod of communication especially since we dont know how much he understands especially with pictures he just says what it is... A bit like catchphrase aha. I hope just like your little one Blakes language expands! May I ask if your little ones preference to parents switched at any time? And how? I know it must sound a tad selfish but even just 10% more interaction than Im getting would be great. X

  • Hi,  sending hugs your defo not alone (although can feel it) you will find your way through. there will be other things that will crop up that will be just between you and your son. Not sure if you have but have you been to your GP and asked to be referred to the community paediatrician? Also in my local authority you can self refer to speech and language from age 2, if not ask  your health visitor to refer. You have got to knock on every door possible, early  intervention is key. Senco is the schools special needs coordinator and cahms are child  mental health services such as psychologists. I would still try and get referral before waiting for anyone to come in and get reports. 

    Take care x

  • Thankyou for replying and making me feel much more normal. We were sent to the paedatricion (sorry about the spelling). By our health visitor, after Blakes behaviour changed we chased her up but she just told us to keep doing what we are doing... Which wasnt really helpful. We see the paed person in 6 months but dont know what to expect since blake had a 20 minute melt down and she wrote the plan in his red book and sent us away! ( Thank god for google!!!SENCO meant nothing to me!) 

    I will do a whip round and thankyou. You don't know how grateful I am to you for calling me normal since I feel very selfish at times xxx

  • Hi blakesmummy, My daughter was diagnosed with autism when she was 4. she is 6 now. She was born 4 weeks prem. And she only slept on me too. She doesnt speak much at all but is learning. The feeling of being isolated is how my ex wife felt for a while as my daughter still pushes everyone away who wants to give her a cuddle. The echoing he is doing can be normal of some Autistic children but the level at which they do this can vary. As far as diagnosis is concerned, we took our daughter to the G.P and he reffered us to a child developement center and she undertook 6 weeks of assessments for the diagnosis. The communication barrier he has could be his reason for the meltdown as it is frustrating for the child to tell you what they want or some other kind of sensory overload. its trial and error to find out which it is and finding ways to reduce the anxiety. There are various communication aids which may assist you in talking to him like pecs cards. these are picture cards which both of you can understand and aid in communication. But like I said, ur G.P is the best option but some G.P's dont recognise Autism straight away so you may have to bring it to their attention like we did.