Autistic diagnosis

I was disappointed yesterday to be told that one of our 6 year old twins is to be diagnosed with Autism. The doctor says it is easier than making an FAS diagnosis & is a way of getting more help at school. As far as we were aware he was classed as on the FAS spectrum, including his autistic traits, which was to be confirmed now that he is 6. Any thoughts please?

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  • But he would be getting the wrong support as not all autism strategies work. If you are disappointed challenge them and ask them why it is easier to say autism than FASD. Also if he is already thought to be FASD, why are they wanting to confuse the issue by saying he is Autistic rather than, "as a result of his FASD, he also meets the diagnostic criteria for autism.". The Dr is correct in saying that it will open up more support as by-law now they are required to help people with autism but you will need to ensure they give the right help. It is a glorious minefield sometimes .........

  • My son was diagnosed with FAS in Canada but since we have been in England he gets just about no help. If he had been diagnosed with Autism, we would, at least be getting some support. I could have probably then got them to pay attention to the FAS. Very sad how far behind England is regarding FAS

  • Hi northof60, I would be very interested to hear what kind of help and support you were being offered in Canada for your son? It is very sad indeed that UK are so far behind.

  • I had an FASD team behind me and could contact them for assistance. This consisted of the social worker coordinator, Occupational therapy support and SLP support, psychologist and doctor. They would come to school along with me to discuss any issues with the head and teachers/support staff and we would all chat about what my son needed. This was an ongoing thing and not just at the start. He received help in class (one on one) and special provision due to issues he has with noise. He was allowed to leave the class to a quiet area when he needed it. Was allowed to listen to music through headphones, had a stretchy band tied to the legs of his desk so he could push on it with his leg. He had a scribe and reader for all exams/tests. Special provision was made so any homework, clothes, lunchboxes etc actually made it home (I had to go to the school each day otherwise). Umm, can't remember what else but there was more. He gets nothing here other than he was in a nurture group once a week for an hour or so. They look at him and think manages but he doesn't. Talked to the school ed psych and got nowhere.

  • I would continue to try to get the correct diagnosis, as it is not quite the same thing to have only the ASD diagnosis. Our daughter recently was confirmed FASD, with ADHD and ASD as a result. I think it helps to increase understanding all round of her behaviours, and the kind of help she might need at school, and in the future. However, the world in general seems to have a better understanding of ASD, so you may get some help that would not otherwise have been offered. Has the other twin been diagnosed with FAS?

  • Yes, both twins were diagnosed FAS at 3 years of age but one seemed to be showing more 'autistic traits' than the other - we have waited a year for his autistic testing. I will certainly be pushing for the other one to be tested now - but because his eye contact is quite good I have been told that he may not be under the criteria .........

    Certainly the current school they attend make little allowance for FAS - it is as if we have 'made it up' as the head has no knowledge of it & is insisting that the boys will 'catch up' with their peers in both speech & learning ability.

    I really appreciate your reply

  • Thank you all for your responses :-)

  • Gosh northof60, that sounds wonderful!! I want to emigrate to Canada!! Over here is a real struggle. Keep pushing for what is right count-to-1o- it takes time and energy, but hang in there.

  • Did you know the FASD Trust do a lot of support for teachers and schools? See if you can get the school to engage with the Trust / other "professionals"? Might be worth a try - use the phrase "an emerging but growing area of SEN in the UK". You have to learn to trot all the latest jargon.... Makes you sound intelligent as well, not just a dumb parent ......!!!! Good luck with the new term.

  • The FASD Trust is working to bring the Canadian Model to the UK and the one stop shop principle as regional centres are being quietly developed. Give us a few more years and we will get there!

  • I am delighted to read this news. Since making contact with FASD trust I have read quite a lot about services other countries have in place to support FASD families. Canada seems to be way ahead of the rest. At the moment I am deeply involved in the battle to get my son diagnosed, when I get things sorted out for him I would love to become a volunteer for the trust, I cannot walk away. The system must stop punishing parents because medical and educational 'professionals' cannot recognise and understand FASD, this is a second assault on out children. Thank god the Trust is there for us.

  • I think that FAS kids and their parents deserve better than this. We all need clarity on exactly what the medical world wants our children to be termed, so that we can all get the help and support we need for them. Whilst these political debates are ongoing, our children are not getting their needs met and families are in turmoil.

    This is clearly unacceptable.

  • Following a visit to the twins school by a second SLT they have decided that he does not display autistic qualities in class (whatever that means!) so it has been decided by the paed (who originally diagnosed them as FAS) that both twins be referred to Great Ormond Street for an 'overall health assessment'. Not quite the outcome I was expecting but hopefully another step towards the official diagnosis we need (and no, I have got no idea why the local paed's diagnosis isn't enough for everyone!)

  • Hi

    We just had a peaditrician appointment , and this is exactly what he said for our little man. M is adopted and has , ADHD, senosory processing disorder, FASD, and is under a OT, as well as the incontenience team.

    We discussed various options to get support for him, and even from the research we have done his root cause is FASD but the co-morbidities are from this including him showing traits of of Autiusm.

    I think show help is better than nothing and like northof60 says 'this country is sadly way way way behind the rest of the world when it comes to fasd'

    Regards D

  • I am aware that many children suspected to have FASD are first diagnosed on the Autism spectrum, as it is through to be an easier way to receive support..

    Certainly the children get help at school etc. Stubbornly I refused the Asperger suggestion, my GP at that time also disagreed and we proved he was not. . As a result we prevented him from being incorrectly labelled. The down side is I am struggling to get the FASD diagnosis and it has cost us dearly. No support in his primary and the same in secondary schools.

    Why is it so difficult to think FASD first and screen for it. Why are we decades behind America and Canada, why do they prefer to label our children 'badly behaved' or 'poorly parented'. Why do our GP's and Educational Professionals lack the necessary skills to diagnose and support. It is vital for the future to get the FASD diagnosis do not give in.

    I look forward to a time when babies are screened at birth and if positive, given all the necessary support they need. The FASD Trust are very supportive.

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