2.5 possible asd

[Marie2812]

Hi everyone!
I'm hoping someone can help me with advice and their own experiences.
My son is two and a half. I suspect he is on the asd spectrum. I have been to my health visitor on numerous occasions to say I'm concerned regarding his development. I'm tired of being fobbed off so I have appointment next week with my GP( had to wait 3weeks to prebook with Her!!!)
When he was a baby he was always described as the good one, the quiet one. He is now really hard work, worth it but very hard work !!
The last 6 months I'm noticing more and more things about him. He is yet to string two words together but has a vocabulary of around 40 words maybe only 10 that other people who don't know him can understand. Everything has to be just right (sometimes spends 30mins sorting his bed covers) he has a persistency to bananas and oranges, if food is broken he is distraught and cries his little eyes out. He seems to me to have some sensory issues, he loves to put anything and everything in his mouth, has to put his fingers in his drinks, will spend half an hour stroking the window at my patio door, or stroking my back. He does not like any type of intimacy unless he has initiated it, he's not happy if we go a different way round a supermarket or miss a aisle we usually go down. He will not use his cutlery when eating, sometimes he seems completely in his own world and won't respond when being called and its defo not selective hearing. He will sit in a corner on his own. Both my sons together eldest is 4.5, he tries to play but my youngest will not play with him, he will either ignore or they will fight! He takes everything we say literally. He also developed a instep with one foot around a year ago which I'm still awaiting a Peadiactric appointment for!! And the last few weeks he's spending 50% of his time tiptoeing. I could go on forever. He's very different and unique and we love him so much. I want to get a assessment so we can provide him with extra support if he needs it.
Basically I'm here for advice on what to expect.
I feel like I'm fighting a battle with the NHS but also with my in laws as they keep telling me I'm trying to find something wrong with him and brush it off. My partner is slowing noticing things too and I think he's finally coming round to the idea that he may be on the spectrum.
Sorry the essay xxxxxx

Hi there,

Sorry to say, but be prepared for a battle :-/ from my experience, and others I have read about, medical professionals are very reluctant to diagnose at this sort of age.

I knew my DD wasn't quite right from about 16/18 months, raised concerned etc and was initially seen by a paed when she was about 3. Got totally fobbed off, because she was compliant in the 10 minute appointment, and basically told it was a parenting issue, and instructed to do a parenting course!

I let it all go for a while, but then had concerns when it came to arranging starting school etc when she was 4. Once in school, and able to access different professionals, we were referred again, sadly getting the same paed again. Slightly better half hour appointment, but basically fobbed off again, and told I was an over anxious mother and to chill out!

Very very unhappy at this point, I complained (jan 2014), April 2014 referred to a child Pyschologist for a second opinion. September 2014 saw said pyschologist. Thorough assessments, meetings and hours and hours speng with us and our DD, low and behold Feb 15 we get a verbal diagnosis of Asperger's and March 15 official confirmation of it. DD was 7 in March!

So as you can see it can take a long time, and it's such a postcode lottery, that you won't really know until you start the ball rolling. All I can say, from my experience, is trust your own instincts and don't be fobbed off. It's not about getting a label, or even a diagnosis in some respects, it's about accessing the right help and support for you all, and that comes with having the assessments and answers. Good luck!

ABA was the thing that helped my boy, and I wish I had started it at 2.5 not 3.5. This charity is giving bursaries for it if you are in London or Birminghsm, but they are means-tested. (Thegivingtreefoundationuk.co.uk ) There is also Caudwell Children.

My son was diagnosed at 2.5 but after a regression. Luckily for us he was in nursery and when we raised concerns the staff went away and thought about / read up about it and agreed there had been a change in his behaviour, language and social skills. I got the distinct impression we were being fobbed off as overachieving parents whose child wasn't ahead anymore when in reality he had gone from short phrases to hardly using words at all to communicate. But once the nursery said he had regressed we were taken seriously. I second ABA and agree wish we had started immediately but the cost put us off. In the end we applied for a statement to access the special school nursery but the council blocked that so we had no choice but to go for ABA, train ourselves and do it as cheaply as we could while we fought appeals. He started using words properly again within a week of starting ABA. He still has challenges but is a very sweet, smart boy who goes to mainstream most of the time (with ABA support which we won at tribunal). The diagnosis is helpful but often brings little in the way of help - we were sent away for 3 months to get used to the idea (while all local professionals seemed to stop for the summer) and then only got termly inadequate 'advice' from speech therapy and autism outreach we had already ourselves months earlier. Concentrating on the intervention as well as the diagnosis is important. Have you looked at MCHAT? Its worth taking a scored version to the GP as not all of them are clued up on autism. You can often self refer to speech therapy, early years specialist teachers etc - your council should have a local offer page setting out whats avail.