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Son diagnosed with ADHD and ASD

CattCatt Member Posts: 3 Listener
edited July 2016 in Community chat
My 8 year old son was diagnosed nearly a year ago with both ASD and ADHD and that was that nothing about how to cope, how to explain to our older daughter, what we should or need to do or anything!! Should I be looking at SEN schools as a secondary choice, how long should he be on medication? 

Replies

  • JenniferUJenniferU Member Posts: 124 Courageous
    edited July 2016
    Hi @Catt, one of our lovely community champions @YoungCarerOverHere is a carer for her siblings, and has experience of ADHD. I'm sure she can offer some great advice about how you should support your daughter in particular. :)
  • YoungCarerOverHereYoungCarerOverHere Member Posts: 50 Connected
    Hi Catt, it's difficult to know what to do after a diagnosis, I felt the same. :smile:

    Take some time to evaluate and reflect on your situation. What particular things does your son struggle with? Don't try to leap too fast, trying to help with everything. Otherwise your eldest daughter might get resentful of the sudden attention focused on her younger brother. For example; pick one stressful aspect of the day, maybe bedtime, and experiment. Does having a strict bedtime routine or reading a bedtime story will help him sleep quicker?

    When explaining ADHD and ASD to your older daughter take into account her age. If she is in primary school too perhaps you could do a "research project" with her and look at websites like:

    https://www.healthychildren.org/English/health-issues/conditions/adhd/Pages/Understanding-ADHD.aspx

    Or CHADD is also a good website for older children/adults with lots of great information!

    SEN schools can be beneficial for some children but it's not necessary. Most (if not all) mainstream schools have a SEN department. At least for my brother (now in Year 9 at highschool) he has 1 to 1 lifeskills lessons, small groups/form and nearly always has a teaching assistant in the room. This has happened because my mum asked (and often fought for) additional help through meetings with staff.

    It's a little different with primary school but, through observation of your son in the classroom, the teacher should be able to offer some behavioural advice. Then, slowly, some changes can be made so that school life is made as supportive as possible.

    Medication is a lifesaver in our family. My brother has had daily medication for 3-4 years and it's made a huge difference. How long medication should be given is up to you. Life tends to get more stressful as we get older so, for the time being anyway, he'll keep having his tablets to help him cope better socially and mentally.

    Sorry for the long comment; I hope it was helpful.
    If this isn't very clear I'd be happy to help clear anything up.

    If it would help your eldest daughter, I would be willing to talk with her more about having a younger brother with ADHD and ASD :blush:

    Take care!
  • CattCatt Member Posts: 3 Listener
    Thank you both xx I recently saw our GP with JP mainly about something unrelated to anything his ASD or ADHD, we did discuss his medication that after 16 months this had still not been reviewed, we also discussed other health issues but one thing he didn't understand was how he could still be at a mainstream junior school... Does anyone else have these conversations??

    We had also had another discussion on help and support that I had been offered .. this did make me laugh.... since diagnose I have been left hanging, I have not been offered anything apart from a letter telling me what my child has to be labelled with and here are so coping strategies.. (not sure labelled is the right description, but is what it feels like!)

    I feel like I have been given a diagnose and left to crack on with it all! Here's a letter with some self help groups so see you later!!!
  • Yiman60Yiman60 Member Posts: 95 Connected
    edited October 2016
    https://www.ipsea.org.uk/
    If you live in England I suggest you ring iipsea and they will advise what you are entitled to in schools. No one tells you anything.
    Has you son been checked forvthe Comorbid issues like Dyslexia , Dyspraxia , Dyscalculia. Another possibility is Irlen Syndrome..
    My sons due to blatant incompetence in CAMHS and Education System were knot diagnosed with Asbergers till lates teens. Youngest we now realise had ADHD when young now has ADD, Now trying to get a diagnosis of Pathological Demand Avoidance. PDA. If you have been given ADHD as part of the diagnosis it's worth checking out PDA site.

    http://www.pdasociety.org.uk/what-is-PDA

    My youngest tried Ritalin for a while and it made his worse. Look at the side effects of this drug, they are horrendous. I honestly can't understand why they prescribe while the contraindications one is anxiety.

    imwish my youngestbhad been prescribed meds for sleeping tho, it was and still is a nightmare, no pun intended. 
  • fisheralison2006fisheralison2006 Member Posts: 6 Listener
    hello, I'm new here and I'm trying to raise awareness of PDA which is a sub profile sitting alongside ASD.  

    Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas:

    • Social Communication Difficulties
    • ​Social Interaction Difficulties
    • Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)
    More information can be found https://www.pdasociety.org.uk/what-is-PDA/about-pda

    we are currently campaigning for more awareness - please take 2 seconds to sign our petition to ensure children and adults with asd PDA receive the correct support it is key to their success in life.

    https://petition.parliament.uk/petitions/202680
  • JulieMcKay72JulieMcKay72 Member Posts: 4 Listener
    We have just been told in the last few days that my son has ADHD but, we are awaiting ASD pathway so, I got a pack to explain most of what I have already been doing to help him anyway, but nothing to help with social area where kids are allowed to tell him “to go away” and “we don’t like you, don’t come to the park” those are a few we have had. Breaks my heart people allow kids to be so cruel.  I don’t know anything else I can do but, worry medication is my worry as my husband doesn't want him on it at all.   Which will be reviewed in 6 months time 
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