When your child is diagnosed with autism and then dumped

img_6296When I broke the news on my social media that my child had just been diagnosed with autism spectrum disorder I had a mixture of comments. Some people were sympathetic, others shocked, and others commented along the lines of ‘this should help you get him all the help and support now.’

It is incredibly common to hear that. But it is a myth.

Both of my children were diagnosed with autism and then dumped.

Having a diagnosis has not enabled them to get the support they need.

Even with a diagnosis my non verbal son still can’t access NHS speech therapy.

Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self care such as dressing themselves.

In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.

They have been discharged by educational psychologists claiming there is no need for ongoing support.

Despite being diagnosed their educational support plans are continually threatened with closure.

Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.

On the actual day of diagnosis we were handed and leaflet and sent on our way. This is happening to so many thousands of others and it needs to stop. Families are emotionally vulnerable, confused, desperate for support and looking for hope. One leaflet is not ok.

IMG_2182My children had more professional support BEFORE they were diagnosed than they have had after!

Before they were diagnosed we had an abundance of meetings, successful claims for dla with huge backing from every professional we came into contact with, access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support. We had six monthly paediatrician clinics and referrals to any other services we needed.

After diagnosis everyone seemed keen to discharge us.

We were diagnosed and just dumped.

We are not alone.

The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.

No wonder so many autism families feel let down and despondent.

We were build up and emotionally prepared for diagnosis only to be ignored afterwards.

Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.

Only then can we perhaps stop this awful policy of diagnosis children and dumping them.

This article first appeared here

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42 thoughts on “When your child is diagnosed with autism and then dumped

  1. Wow That is shocking! How are they able to just leave you & your family with no support? Have you tried reaching out to citizens advice maybe they could help? I couldn’t begin to imagine where we would be without support, just because our daughter has a different kind of neurological disorder doesn’t means she’s any more entitled.

    Liked by 1 person

    • This happens to thousands of children & their families across the UK. The governement funding for Child Mental Health is very often diverted away to the physical health NHS with our children left without support, many self harm, suicidal, violent outbursts, addictions, those with autism, adhd, pda, tourettes, teenage depression stuggling to cope & families falling apart!

      Liked by 1 person

      • That’s unbelievable Mental health is just as important as physical health. I couldn’t begin to imagine where my daughter would be now with the help she has received. I’m so sorry this happens to people & even more sorry it’s not well known.

        Liked by 1 person

  2. The amount of times I’m hearing this is frightening 😦 we were dumped from 2 major support services in Sept ’16 and I can’t see us gaining any more, in my area if you want a service you have to pay for it 😦
    And cut backs in schools too 😦 we were just sent my child’s IPM in an envelope and half of it was missed off 😦 the first one in September I attended a meeting and ok’d and signed it this time what I have is a copied and pasted document with a past date for review not a future one – when I’ve been writing IEPs for 13 years I was very saddened by this 😦 x

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    • It’s no different when you are an adult. They make it quite plain that it’s purely a diagnostic service. Any ongoing support is from a list of web addresses you are given. The Nas dispite all the noise does little for adults. I have a job and quite a good one at that. But I do feel I have not reached anywhere near my potential and that does have alot to do with the fact that interviews for me are harrowing. I’ve had 10 in the last 10 years. Including one as an analyst where I found more trends and errors in their data than even they thought were there. But they thought I was “too nice” for the role.

      Liked by 1 person

  3. Same happened with my son when he was diagnosed I was gave a lefleat an also 1 for him when he was older an that was 3 years ago when he was 11 hes now nearly 14 an ive never seen anyone since was just left to get on with it.

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  4. Happened to my daughter – she has a comorbid diagnosis of ADHD and ASD but CAMHS fobbed is off to the National Autistic Society saying there wasn’t anything further they could do for her. She is constantly excluded from school and now home with a GP letter due to anxiety. This system is disgusting and harms children!

    Liked by 1 person

  5. My son was diagnosed in November and totally agree with this article. We haven’t heard a peep from anyone official since. Luckily there are a couple of local support groups I have been going to prior to diagnoses and that is where I get most of my help/info.

    Liked by 1 person

  6. We are literally on the brink of this happening. Camhs are treating my d for acute anxiety which is dominating her little life. They wanted to refer for diagnosis and when I expressly asked – at the point of referral, during the first stage interview, during the diagnosis meeting – whether the camhs treatment would continue were a diagnosis made I was assured that it would be.

    Diagnosis 3 months ago. Leaflet handed to us. No new camhs appointments were forthcoming. I’m quite assertive when it comes to my children’s needs so called to book her in myself. Now my partner and I have been called in for a ‘review.’
    Another name for dumped.
    No alternative provision will be offered, I can almost guarantee. She’s 8, she self harms, but she’s ASD so to hell with her.

    Liked by 1 person

  7. Same here in Australia. It’s happened to my 3 kids who are diagnosed and happening to my other 2 kids who we are fighting to get help for. It’s disgusting to say the least that autism seems to mean they are less than worthy.

    Liked by 1 person

  8. This is exactly what has happened 2 my daughter.
    11 yrs to get a diagnosis.
    Given written diagnosis that clearly states at bottom of letter daughter is now discharged from camhs.

    Liked by 1 person

  9. That is shocking? My children both diagnosed autism and more go to special school and most thier needs are met through the school ed pysch or speech or ot? I didn’t have to fight for diagnosis there was evidence on the mri and other issues related I hear many do fight though. Tbh I wish they would leave us alone, my son appears to be a project for them he has rare conditions including coloboma (pupils not round) and blind in one eye, facial deformation, heart conditions the list goes on. However if u want help look for it and ask for it – contact your local autism resource charity etc they normally do courses, support groups etc. It can be really scary. we have learned to cherish every positive moment and take each day a day at a time.

    Liked by 1 person

    • Oh I have asked and fought for many supports but funding cuts mean even though my child is in a special needs school he still is not able to access any outside agency support including speech therapy!

      Like

  10. Extremely sad to hear that nothing has changed. My two children (now adults) were diagnosed 18 and 15 years ago respectively and I too was given a leaflet and sent on my way. My daughter hasn’t seen a mental health professional since her diagnosis and neither has my son who is now 24

    Liked by 1 person

  11. Hi there,
    I can sympathize with you as I had a diagnosis of Autism Spectrum Disorder we got offered a course for 6 weeks on a Friday morning which neither of us could do too explain autism but had nothing since we said we can’t do it as we both work luckily I suppose my son has low needs but this still doesn’t help yourselves or other families I just manage best I can. I just hope that things improve for everyone as it’s just so hard for parents

    Liked by 1 person

  12. This is so awful for you and the children. I used to work for a local authority as an outreach worker for families and schools of autistic children. We offered support and training. It is so unfair that not all families all over the country aren’t offered the same thing x

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  13. Our experience too. Our non verbal 3 yr old has waited a year to be offered FOUR speech therapy group sessions. His twin sister is still awaiting diagnosis after 18 months. The whole system is a mess.

    Liked by 1 person

  14. This sounds typical, we have been struggling for years, abandoned at 18 by camhs, 2 year struggle for ‘adult’ mental health (but they are not really geared up foe Autism); now dreading the day of tuning 25 when, so far as I can see, ‘dumped’ really arrives with a vengeance. To add insult to injury we are abandoned by our family, including my daughter who see him as ‘spoilt’ & say he should be out at work!

    Liked by 1 person

  15. I hope this helps a little but yes those services you were referred to were only to make a diagnosis. You can self refer to social services and SEN, they can help you.

    Liked by 1 person

  16. God this is soo true! I feel like writing a book about it! Iv had to struggle writing complaint letters to soo many services we had 6hours of speech and language in a year! Luckily because I researched and never gave up he is doing so well in a special school but for those that arnt so strong and just don’t know where to look there has to be more done!! Maybe a directory book given made up of services in each area? Something it’s horrendous!!

    Liked by 1 person

  17. Same here. You can press them for help and they will offer you a parenting course, inferring that it is your parenting to blame. If social services become involved, they are more interested in your upbringing and in questioning you than in providing appropriate support for autism. I don’t think most CAMHS are qualified to deal with autism.

    Liked by 1 person

  18. Hi there,
    It is extremely sad, that parents/careers are left hanging after the diagnosis, unfortunately it happens almost all the time.
    My son was diagnosed 6 years ago now.
    I was in the same situation, given a booklet by the CDT and that was it.
    Luckily there is an amazing charity organisation(Islington based) that supported me incredibly throughout the early times.
    Just from my personal experience, have you contacted or know of IPSEA national charity organisation that helps parents on the legal side of SEN, it has a huge amount of information, example letters, example cases and a phone helpline too.
    Another option is taking the LA to the tribunal for failure/refusal to asses, or failure/refusal to provide with EHCPlan. IPSEA will be able to advice better on this.
    Best of luck.

    Liked by 1 person

  19. I was interviewing one mother who said that she was relieved when they found out that their child is autistic. I was very surprised first but she has explained. She said that it is like visualising an enemy, you know what he looks like and now know what to do, how to fight with him. So, they (her and her husband) searched all options, all positive results by different approches and methods and implemented them in their life. Now their son who is 7 years old is studying in normal, school and doing absolutely well. He was discharged from autism diagnosis some months ago! I love his story!

    Liked by 1 person

    • Normal school ??

      Are you saying our children still have autism because we did not do enough research or use enough approaches or methods.

      Autism is a life long condition. It is not caused by bad lazy parents. Specialised schools are special because they meet our children’s needs. Going to a mainstream school can be torture for some children.

      Like

  20. How sad. We have support but I don’t like some of their “support”. I homeschool because I don’t like the public school system. I have to use them for an IEP and I’m dreading it because they don’t get my choice to homeschool. My daughter has social anxiety but being in school caused her even more anxiety. I need the IEP for transitioning services and they suggested she take classes through the public school again and I don’t want to. Sometimes services that are offered aren’t good either.

    Liked by 1 person

  21. I am actually astounded reading the comments that CAMHS are involved in the care and support of children with autism. I was a Mental Health Nurse for over ten years and not once did we cover Autism in our nurse training and throughout my work in adolescent, adult and elderly mental health care I only came across one patient with autism with some severe needs that we were totally ill equipped to deal with. Surely it would come under the Learning Disabilities branch of nursing? It is true that mental health nurses can educate and give therapies for anxiety and depression but to make them autism specific one would need specialist training. Is it psychologists who deliver these services? Again, within mental health services even psychologists are not autism specialists. This is really news to me and I am quite shocked.

    Liked by 1 person

    • Why would camhs not b trained in autism? I thought it would be standard training given the increase in diagnosis and proven links with mental health issues?
      Thank you for reading and commenting.

      Like

  22. This is us, Asd diagnosis a month ago, discharged by community CAMHS two weeks ago, back at a and e last week with out Asd/pda daughter, and referred back into the service that could do no more two weeks ago!

    Liked by 1 person

  23. Pingback: Here’s your child’s diagnosis… now off you go! – Spectrum Girls

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