Starting an assessment with Gp

[pumpkinsweetie]

I'm about to embark on getting an assessment for my child (suspected asd) through my gp having waited long enough for the school to gather evidence for statementing, i now know this is my next point of call.

I feel daft and very new to all this and was wondering how to go about it, what things i say to the doctor (do i list everything), and silly question but do i need to have my child present with me for the first appointment??

Also questiona to those who went through the nhs, how long will the procedure take roughly? What happens after the intial appointment ?

Sorry for all the questions, i basically don't have a clue what i'm doing! Tia x

We started this almost exactly a year ago with our ds2 - we think he has ASD (maybe aspergers). We don't yet have a diagnosis - we've been told another 6 months to get to that point - which will be 18 months in total- so be prepared for it to take a while... though waiting lists may be shorter where you are (we are in Hampshire). If it is "severe" ( I don't like that term) ASD, then you child may be seen quickly, but if it is ASD at the "high functioning" end of the spectrum, and if they are not disruptive at school, then it seems to take longer, as they are not such "high priority" on the waiting list. Our son is not disruptive at school, so we haven't tried getting a statement yet, but may do so once he has the diagnosis.

Our DS started school last Autumn, in year R, and school had concerns, and we already had concerns ourselves, so I went to the GP first of all without DS, with a big list of his "unusual" behaviour. GP was not hugely supportive, but said she'd like to see DS herself. I returned with DS (told him we were going to measure his height and weight, actually GP was just observing him). She did then refer us, and we had a initial appointment about 6 months later, the report from that then went to panel to be accepted/rejected (another couple of months) to be seen by a consultant, and we have just had another pre-screening appointment four months after that; and have been told we'll have to wait another 6 months for full assessment and diagnosis. Which will make 18 months or so total, from first visit to GP to actual diagnosis.

So, yes, take a list to the GP when you go of everything that concerns you (write it down, so you won't forget) and also if you have any evidence from school (reports, letters, what the teacher has told you, anything) then take that too.

I was using a document in word to write down all my concerns, and keeping a daily diary; but another SEN parent told me about an app called "DayOne" on the iphone/ipad, where you can write a journal entry each day, and add photos and videos, so I now use that to note down his "unusual" behaviour (he has aversion to certain foods, smells, hypersensitivy to some noises, and doesn't cope well with social situations or change, can have meltdowns for no apparent reason, and will often just stand there and not respond to anyone, literal responses, not understanding humour, etc). You think you will remember it all, but then when someone asks you, it goes out of your head - so try and write it down somewhere, whether on paper, computer or phone.

Remember that you know your child best of all, so don't let any of the "professionals" fob you off - go with what you know. The paediatrician we saw for our first assessment wrote a very dismissive report, and suggested our son didn't even have ASD, as he doesn't have all the classic traits of autism, and he was particularly well behaved for the 10 minutes she observed him; but we were insistent that we wanted an assessment, and school were supportive too, so she did then agree to refer him.

If you have time to read up on ASD, then there are lots of good books out there, and Jessica Kingsley publishers specialize in these. You could also call the National Autistic Society, and find out if you have a local parent support group, I've been going along to ours (even though we don't yet have a diagnosis, our son has so many of the ASD traits so we're pretty sure we know what the diagnosis will be).

Your child may also qualify for DLA (Disability Living Allowance) - this is needs based, rather than diagnosis based - a friend told us to apply, and we did, and are now receiving the lower level of DLA for mobility and care, despite not yet having the diagnosis - we just described our son's behaviour. Worth checking out - as it is a big help then with extra things you might need to buy for your child, or to enable them to attend groups or activities. If you qualify for it, you can spend it as you see best benefits your child.

Feel free to contact me if you'd like to know more. NAS says that around 1 in 100 children are affected by ASD, so you are not alone - so it is worth talking to other parents in similar situations -that is where I have found the best support.

Sorry for such a long post in response! Best wishes.

Thankyou polter & pawan, that 's a brilliant help. Will get writing everything down & keep a diary whilst we await an appointment. Will phone tomorrow as there is a 2 wk wait for non emerg apps at my surgery.

My dm has said videos of her extreme meltdowns may help, as she has good and bad days, but at the moment her behaviour has been very extreme including biting & running off near cars after school. She also 'zones out' a lot, it 's almost as if she is on another planet.

Her reception teacher pretty much knew there was something whereas this year the yr1 teacher & staff seem unbothered as she can be good in school, although academicaly she is very behind her peers and i & everyone close to us understand the everyday struggle it is for us & are pretty much in agreement she may have autism so i know i'm not going crazy!

Routine change or a slight difference in the way something is done & it causes her so much frustration.
Just recently i have experienced difficulty getting her to & from infants to juniors to collect her older sister. So much so she bites me , kicks out, punches and runs off in the opposite direction as to avoid walking that particular way. It has got so bad i'm physically unable to get her to walk to the juniors to collect her sibling so i rely on my dh most days. Unfortunetly this isn't possible everyday so i'm trying to get the school to agree to me allowing me my eldest to be picked up first, but so far it doesn't seem as though they 'll allow for it

Her speech is delayed & her hearing test has been failed twice so communication is very difficult added to her other problems.

The school seems unwilling imho & the way forward now is gps.

Interesting about DLA, as i didn 't know undiagnosed children could ever get this , so will definetly look into that as it would help a great deal with getting her to places & for days out that cater for special needs.

Feel so very sad having to constantly be negative about my daughter for the school to help

You know your child, and you know all the positives and wonderful things about her (and I am sure there will be many- the times you laugh and have fun together) - so don't feel sad that you have to paint a negative picture to get help - we found we had to do this too, and my friends with children in a similar situation always said "tell the professionals (gp/paediatrician/DLA form) about your worst days" - not about the days when it is actually going okay. Keeping a diary/notes will help you remember, and perhaps may also help pinpoint any particular triggers, or changes of routine. Everything (statement, assessment etc) is so dependent on money/resources, and if you don't tell them how bad the bad days are, then they will just assume you are coping, and that your daughter is coping, and doesn't need help (especially if she can "hold it together" at school, and you get the meltdowns out of school)

I can really sympathize with you about the walk from infants to juniors - we have to do this with my youngest (the one with ASD) to get his brother from juniors. Juniors finish 10 minutes later, and it is a 10 minute walk from infants to juniors if you walk briskly, but usually my youngest is last out of his class (and they are usually late finishing) and then just refuses to walk, so we can be upto 20 minutes late picking up my older son, with me on occasion literally having to carry or pull my son along. Fortunately our junior department are reasonably understanding, and there are other kids who have parents arriving later just because they can't be bothered to be on time!

The youngest couldn't ride a scooter or a bike (he can't balance) but when we got the DLA allowance this Autumn, we used it to buy a microscooter (the ones with two wheels at the front and one at the bacK) as you don't have to balance those. I also got the pull along cord for it; and so now I pull him from the infants to the juniors. Most of the time it works, though he is not at all road safe, and still at risk of running off. But might that work for you? maybe you could borrow one from someone and give it a try? I also now give him a snack (a biscuit or something similar) immediately when he comes out from school, before we start going to the juniors, so hopefully the sugar gives him a bit of energy, and picks him up a bit, and puts him in a better mood, and aids a smooth journey - might be worth a try.

I never got round to doing videos, but if you can do that, then I think it is all helpful to support your case. And IEPs from school too (if you have them) like Polter says above. And if you don't have IEP, maybe ask school whether she needs one - it sounds like she should have one, especially with delayed speech and hearing issues? And keep a note of how often she "zones out" - as that can be when everything is too overwhelming, or when there are sensory issues. Do the school use a visual timetable with her? We have one at home and school, and try and warn DS of any change to routine - if he knows about it, he can cope with it much better. We also remind school to do this - even if it is something as simple as "no PE today" when he is expecting it - as this can upset him, whereas if they remember to tell him about any changes, then it is usually okay.

We had a great teacher in year R (very perceptive to DS's issues) but his year 1 teacher is NQT, and whilst he is a lovely chap, he has no idea what to do with DS or how to motivate him to be included in the class, so this year is proving to be much more difficult.

I think it will be a fact of changing class every year that there will be good and not so good teachers.... so maybe you need to try and get your SENCO at the school on your side, and keep talking to him/her about what is working for your child, and what the school can do to help.

By the way, if you are going to apply for DLA, then phone up for a form (don't do it online) - as you have phoned, and you are successful in getting it, they will backdate it to the date they posted the forms to you. If you do it online, it is only from the date you submit the forms, and it will take you a lot of energy and time to fill them in. I found doing them on paper (so you can see the whole form) was much easier than doing them online. And having the diary /notes really helps, as you have to give examples of behaviour and how often it happens. And remember to keep a copy too, so that you know what you have written. From what you've said about your daughter, I think she'd qualify, at least for the lower level.

There's some helpful info on filling them in on the Celebra website here: www.cerebra.org.uk/english/getinformation/publications/pages/dlaguide.aspx
Well worth reading their guide.

Our son went through a phase of biting, currently he's spitting, and I sometimes wonder if he uses it both to express his frustration, and also to keep people away from him (he gets overwhelmed with too many people, and spitting works really well to make other kids keep their distance). I haven't got any answer for it, other than to try and work out what the trigger is - usually when he is cross, frustrated or angry.... and then try and avoid those situations if possible. (sometimes caused by him and his brother arguing, so often out of my control)

Best wishes for the GP's appointment - remember you know your child better than they do, so even if they are unsupportive, you can still insist that you want them referred. And hopefully you'll have a supportive GP, who will be helpful!