The long road to an ASD diagnosis

Discussion in 'Special Needs Support' started by minties, Sep 19, 2017.

  1. minties

    minties Complete

    Nov 17, 2009
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    The first I knew that Thomas might be on the spectrum was at age 4.5, at his final Well Child check. The nurse said he was obviously on the spectrum, but high functioning so to just see how he goes once at school etc. I was shocked so just followed her advice.

    To me he's just Thomas - I don't see him as a bunch of symptoms, and he was all normal and fine as a baby and toddler. Eye contact was great, he was social and friendly, waved and smiled and laughed and cuddled. All the normal things.

    Once he got to about 18 months I was worried about his speech, he didn't end up talking until 23/24 months. A red flag?

    Anyway, after his first school teacher contacting the public health nurse with worries, we went down the road of formal diagnosis. The first lot of initial forms I filled out were "lost", so we had to start all over again. Not a fun thing on a public health system!

    So now, he's finally getting close to the diagnosis part. I'm so nervous. I hate having him labeled, and I feel like it must have been something I did wrong to make him this way.

    We have two meetings with a child psychologist next month, the final meeting will be on the 28th will all info gathered from myself, his teachers and the paediatrician at the hospital.

    The paed is tentatively saying Thomas has scored rather highly and he says he's very sure he is on the spectrum.

    He mainly gets along just fine with life, but has zero interest in the kids at school and has a few quirks. He seems to live in this bubble where home and us in it are all that matters, and everyone else could vanish.

    Anyway I'm just nervous and worrying that he's never going to have friends, and that a diagnosis will make the teachers not like him or want them in his class as he goes through school :-(.
  2. liz1985

    liz1985 Well-Known Member

    Jan 8, 2011
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    I can totally relate to everything your saying. I think we're in different countries so the process is slightly different but my DS is 5 coming up on six and he's on the autism pathway which means he's been identified as potentially being on the spectrum but he's not yet diagnosed. He went on the pathway in June and he won't be diagnosed for 18m to 2 years it's a really long wait here.

    I also never would have suspected DS had ASD until he was 4 ish. As a baby/toddler he showed no signs what so ever and hit all milestones on time and some a little early. From 3ish I noticed that he couldn't follow routines and boundaries as well as other children his age e.g. he could never sit through song time at playgroup and didn't have any danger awareness. ASD never crossed my mind though as he had none of the typical red flags I just thought it was a bit of immaturity/slower development.

    It was his primary school teacher who brought up the major concerns when he was coming up on 5 and by this point I was beginning to realise there may be something but I was actually thinking ADHD rather than ASD.

    His main issues are social and communication plus he has a really low attention span. He is very over friendly with strangers and has no awareness of personal space. He loves being with other children but they soon loose interest in him as he struggles to join in play and follow rules etc. He has no real friendships although this upsets me way more than it upsets him. Him never having a friend is one of my biggest worries and really upsets me. He takes language very literally and sometimes struggles to communicate his thoughts effectively so again children loose interest quickly.

    Academically he is doing well, he can read and write etc to the same standard as peers but requires a lot of adult support to keep on task.

    His school have been great and here the school play a massive part in his referal and until he ge5s an official diagnosis school are in charge of he SEN support plan and pretty much all support comes from school.

    Will your DS get any additional support once diagnosed? I hate the thought of DS being labelled as well but here the label is what will get him the support he needs. He really is going to need some 1-1 support at school in the future and without the diagnosis school will struggle to get funding for that.

    I also understand about thinking it's something you've done that caused it. Sometimes I torture myself looking at photos of DS as a baby or toddler and drive myself mad thinking that I no there was nothing wrong with him at that age or trying to remember if there were any signs I missed or anything that happened to cause it.

    I know it's generally believed that children are born with ASD but I've read some theories that they develop it and sometimes I think DS must have because I'm 100% he didn't have a single sign of it when he was younger and now he displays so many symptoms it's unreal.

    Are your school supportive? What kind of support is on offer where you are?

    Sorry I know that was such a long reply and mostly just rambling I just can relate to so much.
  3. MomLeslieM

    MomLeslieM Member

    Jun 23, 2016
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    You said it best right there ^^^ no matter WHAT he gets diagnosed with he WILL always be Thomas :). Having a diagnosis will help him to get what he needs so that he will have friends, teachers will like him and see him for who he really is and succeed in life. I know people are often afraid of a diagnosis but, as a Mom of a 21yo w/ a high functioning autism diagnosis at the age of 9, I'm SOOOOOO glad we pushed forward and got that as it opened doors for help. Hang in there and remember what you said - to you, he's just Thomas and not a bunch of symptoms -- others will see him that way too so try not to worry even though it's a Mom thing to worry!!!!:thumbup:
  4. shambaby

    shambaby hayden's personal chef

    Jun 3, 2009
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    Hi, my son’s school have started the process of assessments towards a possible ASD diagnosis, which actually shocked us as his previous teacher essentially said he was just badly behaved! But since they have said it, there are so many signs, just not ones I knew were signs until I started to research. Anyway, school are putting a very positive spin on things, stressing that most of the time a diagnosis will make no difference to his day to day life, but it’s a card to play if he needs it (special arrangements for exams when he’s older, support with things he finds tricky etc). And my hubby was (still is really, I think) concerned about him being ‘labelled’, but it’s far better than a ‘naughty kid’ label which is what he was getting before, and may actually help people to understand him better.

  5. babycrazy1706

    babycrazy1706 Mummy to Elijah and TTC

    May 3, 2011
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    Hi all. My son is also labelled as a naughty kid at school. He's 5

    Recently he's been hurting children for no reason and they say he shows no remorse

    He struggles with showing his emotions, he won't cry if he's hurt even tho I tell him it's ok to cry.

    He is disappointed in himself and his self esteem has gone right down
    He even said last night that he thinks he should die as everyone thinks he is nasty
    They say he shows no remorse but imo he doesn't know how to
    He knows what he's doing is wrong and he doesn't know why he does it
    His behaviour at home is fine but he's very giddy with other children like he can't control his excitement and he shouts sometimes, to me it's like he gets overwhelmed

    He is being assessed this week at school
    I'm finding it all very stressful

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