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You believe its autism...

ceejaydj

hello there,

I am feeling very paranoid at the moment as my Daughter is due for an asd assessment next year.

Possible autism was picked up at 2yrs and through many assessments with different professionals she was added to the long waiting list for an assessment for a diagnosis.  Fortunatly, we were given a cancellation assessment when she was 4yrs but it was inconclusive and they felt it was too premature to diagnose her at that time as she had shown she was able to adjust to school etc

She will be 7ys next year and due for a review.

For the last few years i have thrown myself into learning as much as i can about autism and the gender differences and i am 100% convinced she has high functioning autism (she has a speech and language delay).

I have even researched all the co exsisting disorders that she may have instead of autsim but nothing fits aswell as HFA.  She ticks boxes for ADHD, ODD, verbal dyspraxia, sensory processing disorder, semantic pragmatic disorder...the list goes on

I am worried that they will not diagnose her.  She is in mainstream school and is the quiet one that does no wrong, sticks to all the rules and gets on with her work...the school cant underastand why she is on school action plus as they feel there is nothing wrong with her.

Has anyone else been in this position before?  That you feel 100% that your child has autism regardless of what the school thinks.

And, were you convinced your child had autism but to be told that after assessment they dont?

What will be will be, i just need to know now.

Thanks

Parents

  • ceejadj,

    We are in a very similary position here. My daughter had a severe language delay aged 3-5 and was seen by the paeds aged 5 and discharged. 

    She was referred back to the Paeds showing problems with attention and the Paed suggested she is autistic. She has since been reviewed by the speech and language therapist (the one who sorted her out aged 4-5) and suggested she shows signs of high functioning autism and recommended diagnostic assessment. We are waiting (14 months) for the assessment. My daughter is now almost 8 years old and is really struggling with reading because her understanding of the words is completely literal and she also has the most unbelieveable meltdowns and difficulties with social interaction. School don't see any of that though and there is a bit of eyebrow raising going on.

    I am however now convinced my daughter has HFA because due to her age the difference is now so apparent and the cracks are beginning to show academically (even though she is bright). I am stressed about her self-esteem taking a nose-dive in the future and paranoid because in the eye of most people she is just 'quirky' and 'lively'. 

    We are considering private assessment despite the £££ because I am finding it stressful waiting so long. I am finding it a very isolating experience. I have spoken to a brilliant Ed Psych (who does diagnositc assessments for autism and has worked with an autism specialist team for 18 years) and he said without even meeting my daughter that she will mostly likely receive a diagnosis of ASD eventually. Hopefully at some point we will be vindicated and then we can move on. At the moment it feels very much like being in limbo.

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  • ceejadj,

    We are in a very similary position here. My daughter had a severe language delay aged 3-5 and was seen by the paeds aged 5 and discharged. 

    She was referred back to the Paeds showing problems with attention and the Paed suggested she is autistic. She has since been reviewed by the speech and language therapist (the one who sorted her out aged 4-5) and suggested she shows signs of high functioning autism and recommended diagnostic assessment. We are waiting (14 months) for the assessment. My daughter is now almost 8 years old and is really struggling with reading because her understanding of the words is completely literal and she also has the most unbelieveable meltdowns and difficulties with social interaction. School don't see any of that though and there is a bit of eyebrow raising going on.

    I am however now convinced my daughter has HFA because due to her age the difference is now so apparent and the cracks are beginning to show academically (even though she is bright). I am stressed about her self-esteem taking a nose-dive in the future and paranoid because in the eye of most people she is just 'quirky' and 'lively'. 

    We are considering private assessment despite the £££ because I am finding it stressful waiting so long. I am finding it a very isolating experience. I have spoken to a brilliant Ed Psych (who does diagnositc assessments for autism and has worked with an autism specialist team for 18 years) and he said without even meeting my daughter that she will mostly likely receive a diagnosis of ASD eventually. Hopefully at some point we will be vindicated and then we can move on. At the moment it feels very much like being in limbo.

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