Published on 12, July, 2020
Hi all im mum to four children and have recieved news this week that is looking highly likely we will be soon recieiving a diagnosis of autism.
My little adopted daughter is 8 and since being a baby things have been difficult, I have been asking for help since she was 3 and when she was almost 6 we got referral to camhs, shes also seen a paediatrician, genetecist, educational psychologist and occupational therapist.
She has been assessed for foetal alcohol spectrum disorder which they havent been able to rule out and dont feel at the moment its appropriate to diagnose her birth mum did drink and take drugs during pregnancy.
Shes always been quite particular, stubborn and things have to be just right, she has a huge difficulty with clothes and things feeling right, her hair has to be done specific, always a pony tail and always in the exact spot touching her head right, her clothes are limited, after being assessed by occupational therapy she has sensory processing disorder struggling with vestibular, proprioceptive, tactile, auditory and visual processing.
In school shes about 12-18 months behind maybe a little more in her reading, she is on school action although as she has outside agencies involved camhs and OT im thinking it should be school action plus but not sure. Her OT has requested shes assessed for dyslexia, her IQ testing showed she has a borderline IQ of 84/85
In March she had the ados assessment followed by them going in to school to observe her, the school observation showed she was needy of adult attention and rarely managed more than a few minutes without needing the interaction or support however her friendship wasnt age appropriate and she often isolated herself, her expression was mostly blank and she only smiled once during her assessment. Her ados test came back with a score of 12 however as she also has attachment difficulties they are still assessing to ensure they make the right diagnosis. She does have many autistic behaviours as well as many that are attachment so we are awaiting an appointment for assessment from the attachment disorders team.
Does anyone know if the ados test would have scored like that for attachment or is that purely autistic behaviours?
Her camhs doctor said she likes to be thorough and 100% sure before giving out a diagnosis and although shes currently 90% certain she has autism and attachment she just wants a little longer to make that 100% which i am in agreement with. She said they also want to assess her for adhd after observing in school.
Just wondering if anyone else has gone through similar, I fully agree she has attachment difficulties and agree that she has many autistic behaviours as well but would be great to hear from other people in a similar situation.
The ponytail thing is interesting - I had similar anxieties when I was little.
I used to repeatedly say 'my ponytail, my ponytail, my ponytail, my ponytail.....', believing it was lose, and I would have check and re-check my hair. It is similar in a way to OCD, which I also have.
Hello again,
Found this sample letter on IPSEAs website, Hope its helpful,
www.ipsea.org.uk/.../Common-problems.aspx
Coogybear
Hi littlemiss06,
An experience many like yourself know only too well. If a child is overtly disruptive in the class they often leave those who are quieter or who have less obvious needs, overlooked.
Both my boys were high functioning and I was fobbed off by the Headtecher at their Primary School continually. This was despite the fact that both were very severly dyslexic and had ASD. It's not for a Head to tell you who is 'more worthy,' your child has needs, which it sounds like, are not being met.
Personally, I'd put in a request to the SENCO for your child to have a Statutory Assessment under section 323 of the Education act, with a view to a statement. Do so in writing as soon as you can. I'd contact IPSEA (Free) in the first instance to find out if a request and the tiime frames left (As we are now in May) will be sufficient to get the ball rolling in time for the September changes.
http://www.ipsea.org.uk/
A request to assess, supported by the School will get the process moving more quickly. If your daughters School does not support your request you can still apply to the LA without the Schools support, but you may be refused by the LA as the child is still at School Action. LA's often refuse assessment using the reason that 'insufficient time has been given at a certain level to prove that the child has not improved sufficiently.' In this event you would need to go to tribunal to appeal that decision.
Be prepared for your School to be reluctant to help, as the process requires submission on their part, of intervention already given. Keeping a child at SA when they clearly have quite complex needs is not really acceptable.
The attached link may be of help to you. It shows what the schools etc should be doing,
webarchive.nationalarchives.gov.uk/.../dfes 0581 200mig2228.pdf
Because you have most of the outside agency assessments already in hand, it seems likely (depending on your Local Authority) that you have a strong case for statemented support. All I can say is that the earlier your child gets targeted support the better the outcome in my experience.
I hope the above is not too much for you to take in and does not alarm you. However, I see many paralells to my own experiences here and i wished i'd acted sooner.
Please feel free to contact me if i can be of any further help, but in all matters legal i'd get IPSEA to help you in the first intance.
Regards
Thanks coogybear you must have just posted as i was, i didnt see your reply before. I think you are right, i need to get her more support in school, i have always just sat back as the headteacher said there are more needy children and it kind of made me feel bad for asking but if she is indeed as needy as she was when they observed her in school keep needing adult interaction then surely the only way forward is too get her some one to one support
Totally agree with the hair thing, shes exactly the same, she wont change it for months and months, last time she did it was a plait in the back of her head and she had to measure with her fingers that it was exact, she would put both fingers at each side and guide them to the front of her head, if one finger got there before the other it wasnt right and i had to do it again, omg that was such a nightmare and im glad its a pony but like you say it has to be so tight and exact.
To be fair i dont really understand attachment much either, she will bond but it always feels really strained like its not comfortable, she doesnt really want hugs when shes hurt or anything like that, it feels almost like she just exists here but isnt quite fully bonded to anyone but im not sure if thats just a common thing with autism.
The hospital are sending a report through explaining that they are still doing assessments but are looking like they are going down the route of autism and attachment and possible adhd, im not sure it will make any difference in school with regards support but we can try.
Thanks for the welcome misskittykat :)
Hi littlemiss06
Like misskittykat, I know little about attachment disorders, however, my own son; who is 16 now, does display some mixed behaviors similar to what you describe. For formal appointments he point blank refuses to go in alone. Dentists, doctors, opticians anything like that he insists he's accompanied or will not attend. Aside of the fact that he lacks the organisational skills to get their on his own recognasence, only being able to access healthcare or support with a familiar adult presen,t is a significant barrier for him.
In social situations with his peers he's very anxious and naturally has a great deal of trouble fitting in. He's slightly better with adults he knows, but it takes a long time to establish any level of trust.
Moreover, in his 'friendship' attempts; and I use this term very loosly, he can become completely obsessed with an individual. These types of friendship establishments often burn out quite quickly and represent almost a bereavement on his behalf when they end. It takes considerable time for him to get over.
This proved disasterous when professionals such as his Targeted Youth Worker abandoned him and just disappeared onto a new job without any warning. Trust in these circumstances is then very difficult to re-establish with anyone poporting to help him.
I agree with misskittycat on the School Action plus front. School Action is hardly, enough support for your daughter. Personally, i'd consider a statement direction if i were you. It seems that her needs would be better served by something more concrete and the earlier she has targeted support, the better.
Sorry i cannot be of more help.
Coogybear, xx
Hi Littlemiss
I don't know much about attachment disorders but would like to know more. My 13 yr old was diagnosed in Feb this year but much of what you have said, I can relate to. The pony tail thing used to be a nightmare - my daughter wanted it so tight that she began to get a red sore head. She now has it down all the time (which I'm not keen on as its long and thick) but it takes about 6 months to persuade her to change how she has her hair and then we are stuck with it for a good 18 months!
Regarding attachment, does this mean she's can't form bonds with anyone? My daughter finds this very difficult - either myself or my sister have to go with her when other people (like her dad or grandma) want to take her out. She won't form a relationship with her nan and will only do educational things (she has outreach education at the moment) with the same two staff that she has got to know.
Your doctor sounds as though they are being very thorough but I suppose its best in the long run. I'd also speak to the SENCO about school action plus before everything changes in September. I'm currently trying to get a statement as my daughter has been on school action plus for years and has gone downhill in the last 6 months.