Son aged 2 diagnosed - what now?

Hello everyone :) 

my son is 24 months and was diagnosed Autistic last week. We are waiting contact from SALT and Portage and a place on a More Than Words course.

do I need to be doing anything else? Work are not being supportive and won’t let me have unpaid leave for appointments unless I take it as a block of a week and give 21 days notice because we don’t get DLA. Preschool have said we can’t access 15 hours a week funding because we haven’t got a statement.

how do we get a statement? Do I need to apply for DLA? I mean he’s very difficult sometimes, but then people just tell me all 2 year olds are difficult and it makes me think I’m being a pathetic rubbish parent so I don’t know why we would be entitled to anything really.

sorry if none of this makes sense: I was expecting years of assessments and things and didn’t expect to get a diagnosis so feel really unprepared.

thank you 

rooma

  • Hi 

    You can claim dla, it takes along time and you can get rejected a few times. My daughter is 8 awaiting assessment and we have just submitted a claim on the advice of support worker. The dla is based on the care and support he needs in comparison to the average 2 year old, so any additional help you provide him is considered it is worth looking into. 

    I'm not sure what dla has to do with getting time off work as most employers allow time off for appointments I would personally check with hr as I think that is discrimination. 

    As for a statement of needs contact your local authority they can advise you on what you need to do.

    Don't listen to other people, you are not a rubbish parent. YES all 2 year olds can be difficult but sometimes having a child with asd is more difficult and unless they have been there tell them to "sod off" 

    He has only just been diagnosed give yourself time to accept that, learn as much as you can to support him look at support groups in your area they really can help as people there understand and can offer practical advice, and this forum is great the insight from the autistic community is the best way to support your son.

  • Hi there, my 2 year old has global developmental delay and is on the waiting list for autism screening and genetic testing.

    Regarding getting a statement. The responsible clinician has a duty to do a section 23 referral to the LEA informing them of any children who have additional needs. It may be worth chasing the clinician that diagnosed your son and asking if this has been done. Once done your son should be assessed at ore-school by the area SENCO (my daughter has her assessment today!) to establish whether or not he meets the criteria for SEN premium funding.

    The application for the 15 hours free childcare is done on your local LEA website. I had to fill in a form and supply additional information in the form of scans of all my daughter’s reports from various healthcare professionals. We got the funding and she doesn’t have a statement yet. Maybe phone your LEA to ask for guidance regarding this. 

    You will need to apply for DLA yourself. The form is available fir downloading and printing off to fill in on the HMRC website. Again I sent my daughter’s DLA firm off along with supporting evidence of copies of all her reports. She’s recently had the middle rate awarded. There is then a limited time frame after DLA is awarded in which you can also apply for carers allowance, I’d strongly suggest that you do this especially if you’re not able to work due to caring for your son.

    You are NOT a rubbish and pathetic parent. You’re doing amazing! Just getting your son through the diagnosis process is a great achievement as it’s not easy. Unfortunately no one tells you what you have to do regarding applying for various things. I’ve only found out through being told by other parents of children with Autism or SEN. 

    Lastly, good luck :-) I know it’s an uphill struggle at times but you’ll get there!

  • Hi,

    Remember the NAS helpline is always available to answer any questions you may have. You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Or Alternatively, should you prefer to send a message, you can do so via their webform:
    https://www.autism.org.uk/services/helplines/main/questions.aspx

    SteveMod