I’m not going to lie, when MO was diagnosed with High Functioning Autism with possible Sensory Processing Disorder I freaked out a little. How will he cope with school as he grows up? Will he have friends? How will we cope? What about when his older? All these questions went running through my head and other than the basics we had no idea where to turn. So I decided I will research and talk to people and see if I can do a blog to help other people in a similar situation.
I am not going to go through th diagnosis stages as from what I have heard it varies from region to region. Infact once you have the diagnosis the help varies but at least I can give some websites and a rough guide to help you find your feet. The most common thing people said was unless you know what your entitled to you won’t know what to push for and ask about as you WILL need to push.
Disclaimer this is just the research I have found and people’s experiences, it is not definitive and may change from region to region.
So first thing is first. You are most likely going to ‘mourn’. This isn’t because you don’t love your child any less then before the diagnosis, it is the fact you are mourning for your child, for the ‘easy’ life they would have had, for the ‘less worrying’ future, yes as a parent you will always worry for your child that’s human nature but when you have been told your child is on the spectrum this whole different layer of worrying comes. I felt silly saying I felt like I was morning for MO and kept it quiet but you do go through the 5 stages of grief, and it was only when talking to other parents openly and honestly when researching that actually this is quite a common feeling. So do not feel like bad parents for feeling this way, don’t feel alone as most of us if we are really honest with ourselves have felt that way.
I was also told as a parent you are the only one who is going to fight and shout and push for your child. Make sure you do this. Make sure you get the help you need and do not feel bad about the fact that sometimes you can’t cope. Whether it be because your child has been flapping his arms all day and it’s hot and you can’t get him to stop, to a whole day of autistic meltdowns that can get you physically hurt or even down to just not being able to cope with the fact you will always have to fight and your just tired. This is why it is so important to get help and seek support groups, so that you can talk to people who are going through the same thing as you.
A brilliant resource for general information and basic rights that I would highly recommend going on is The National Autistic Society. It goes from first diagnosis right up to concerns about employment as adults. It is a really good general website to go to. In my area I also have Autism Anglia who give more localised information, so find out what your local organisation is as they will be able to help more about local events and groups. Another website and magazine I would highly suggest is the Autism Eye magazine, it gives different articles about research that’s happening, different articles to help you through different situations that will arise and advice on things such as different therapies and natural treatments.
Schools and preschool
MO was diagnosed in reception, so this next part to be honest is just from research and talking to other people about their experiences. Once diagnosed a lot can happen if your child isn’t old enough for school and it is done via your health professional. You could be referred to a specialised team who help with behaviours, so they can come to you and help with toilet training, sleep training and general behaviours and help you and your child to work through different situations. So advice on what to do if your child is bouncing all over the furniture, they are there to give advice. In my area it is NHS funded… this may not be the case everywhere but even as toddlers there are people to help you. They are professionals who deal with these behaviours all day, every day and so will be able to help and advise on how to help. One mum I spoke to advised that she was struggling and just talking to her local team she was able to really understand why her son was doing certain behaviours and with a slightly different approach she managed to help and decrease the behaviour, so where her son was breaking things everyday she got taught how to speak positively to her son, tell him the chairs are for sitting on, instead saying ‘No’ ‘stop’ etc. She also learnt more about why he did the behaviours and so when she was advised on the different technics it made sense and so although it was hard to adapt her parenting to start with she is glad she persisted as actually it made her and her sons life better. Isn’t that what we all want for our child?
Once at school, each school will have a Special Educational Needs Coordinator (SENCO), talk to your SENCO and let them know what’s happening and your concerns. Once we had spoken to our SENCO we had to then go to one plan meetings and these have to be done regularly and show improvements or whether there aren’t improvements. If there aren’t improvements or not enough improvements then you can start talking about an EHC plan, this is the new statementing system. In basic terms this is a plan for your child, so one to one needs etc and these are given and funds provided to the school through the Local Authority. There are lots of laws and regulations in regards to EHC and the processes and what the schools have to do and where I am not legally trained and don’t know the system well enough I am not happy to blog about this process just in case I came across the wrong information, however this is where this blog is handy, if you are going through this process and you really don’t know what’s happening then get in contact with IPSEA , they are legally trained volunteers and can help in legal matters and rights when it comes to schooling.
Once you have an EHC plan you can start looking to see whether mainstream school is right for your child. This is a very personal choice and something you would have to research but there are lots of different schooling options out there and it is definantely worth looking into.
- Mainstream school
- Autism unit – a large school may have an autism unit, this is a mainstream school with a specialist unit. Some people I have spoken to have said their units just means there is a block with sensory rooms and quiet areas so that in a stressful situation the children can walk to the unit. In other schooos the unit is where the children do all their classes and they have lunch with the main stream school. It really varies but take a look at the local schools around you and decide if this is right for you.
- Special Needs schools – an EHC plan is needed to attend. Depending on area the nearest school could be quite a few miles away. In my area there are special needs schools just for autism or similar needs and there are special needs schools which help with physical disabilities as well as autism.
- Special needs school with boarding facility – we really loved the Gretton School here you need a diagnoses of Asperger syndrome or high functioning autism. It is just a school for this area of the spectrum which is really lovely to see such a specialised school, they also board Monday-Friday if this is needed but all this depends on your child’s needs, there is also places like The Hesley Group that again offer accomadation for learning in a safe enviroment.
Most special needs schools also go from primary to secondary school so you do not need to worry about the transition which is a positive. You are also safe in the knowledge your child will be fully cared for by people who fully understand their needs while also having the equipment for them.
Hopefully this gives you a little understanding about what is out there in education for your child that there really is a good mix out there to best suit your situation. Every child is different which is why having such varying ranges of schools gives you one less worry as you can really find the perfect education for your child, not just be told they must go here.
One of my main concerns was for college and beyond. I understood schools are fairly well equipped but worried for the adult section of MOs life. This is where I loved going to The Autism Show, seeing so many stalls with different colleges was fantastic. We even spoke to one college where one of their students has just been accepted into university to do art. There was another college who are between 2 universities in Sheffield and so they can still get the university feeling while being in a safe and secure school. Just walking around seeing that there are collages around that give the further education really helped settle my nerves about the future, that just because MO has autism doesn’t mean he can’t do something with his life. I spoke to a lovely parent who’s son goes to a specialised college, they were told due to his autism and other issues he would never be independent, he was hesitant to send his son to the college but decided he needed to. At the college they have a little flat style area where they learn basic life skills, cooking and cleaning as well as doing their course. He now admits that it was actually the best thing to ever happen to his son. He will still need assisted living but he has independence.
Support for parents and young careers
Your school should be able to refer for you to get a support worker. Ours is actually provided through a charity, but our support worker is there for any questions we need but will also have information on different support groups for you and even your other children. They will also help explain what is happening and why and what the next steps are. They basically do what you think they should do…they support you. Without our support worker I would never have known there are 2 different groups for parents to go to talk to other parents going through the same situation, I would never have known there is a group BG can go to and SB can go once he starts school, to have some time to be kids, to have fun and actually make friends with people in similar situations. They will also be able to guide you to different funding sources. They also told us about different courses we can attend locally at our closest special needs school to learn more in regards to ASD. They are a fountain of knowledge. We didn’t know we were entitled to one until someone mentioned it. Again it maybe called something else, someone I spoke to said their support worker is actually based in the school, another I spoke to mentioned their support worker is called an extended services worker and the list goes on but basically get your worker they are on your side.
Non government therapies and support
So I have generally spoken about the NHS and schools that have government funding. This is not the only help out there! With the lengthy waiting lists getting help or finding adequate help can be an issue. So I have found a few places that could help you.
Beam ABA Services – this service is all about Applied Behaviour Analysis (ABA) therapy, they can do online or home based programmes and Taylor make the therapy for your child. They are available in London, Manchester and Birmingham.
Intergrated Therapy Life – this company provides speech and language therapy. For MO he does need speech therapy due to mispronouncation of words however he has not been referred as of yet due to the waiting lists and budgets of the NHS and so a service like this is perfect for parents in similar situations. They come to your home and do the therapy in the child’s own safe area.
Autism Links – this website does what it says in the title it is
Dedicated to making those helpful and sometimes vital links
It gives to local events, news and social media and a whole host of other links.
Playtoz – The owner Sue Gascogne is a play and creative arts therapist. This particular co pang is based in Essex but it is a good reminder to check your local therapy centres.
Sensory and Equipment
There are hundreds if not thousands of inventions to help children live an easier life with autism.
You can get special plates to help encourage eating, pencil aids to help handwriting, fidget aids, weighted blankets, lights, the list is endless. Each child will react differently to different sensory equipment. There are a lot of toy libraries around which lets you try items before you buy or even just so you can switch and swap toys easily without shelling out £100’s on a toy that doesn’t work!
We got our equipment at home from Learning Space, they were really helpful as I could ring up and talk about what I thought was needed, and MOs needs and they advised a much better list, all for the same price. I would also highly recommend Space Craft who was recommended by a fellow autism parent as was Special Direct. There are lots of other stores and just make sure you check reviews before ordering.
Since having sensory equipment MO’s behaviour has been so calm. There have been instances where he has screamed and kicked and thrashed but I can now wear short sleeves as I don’t have marks to hide from his meltdowns. It has been well researched and documented that sensory toys help and depending on your budget they range from next to nothing to £1000’s.
I’m also waiting to test out some fragrance products to use in the house from Fragrance and Autism, they researched and researched and found a balance of scents that should in theory help people enhance their lives using fragrance. So I will let you know once I have tried out the products.
I have left this section to last. Mainly because it is the hardest one to write about as pretty much it is negative news. From research and talking to adults who are on the autistic spectrum there isn’t a lot of help out there. It looks like once you leave education there is barely anything.
I saw lots of homes and assisted living charities where they advertise it as a home away from home, but not all autistic people are suited to this. If your lucky you maybe able to find a support group for being a carer however for the actual adult dealing with autism there is next to no support. I can’t find any charities or organisations unless like stated it is for assisted living.
You also have a whole category of Adults who have just never been diagnosed until recently as being on the spectrum and although it was around it wasn’t as well known and as well understood ‘back in the day’. I spoke to a lovely lady named Louise who is in this boat. She was diagnosed around 6 months ago. She was treated for depression knowing that it wasn’t depression, it was only by a circumstance that she realised she may have been on the spectrum and got diagnosed. The diagnosis still took around 18 months but unlike children she has found no support. She is now paying for counselling to be her support. Although she has lived with being high functioning (Asperger’s syndrome) it has completely changed her outlook on herself.
I asked Louise for a piece of advice for anyone who thinks their in the same situation and she said
All I’d say is if you have a incline you may have go get help, diagnosis doesn’t change you but helps you understand yourself more and re evaluate your whole life
That alone screams out that there should be a support system in place. If you know or work for an organistion that helps newly diagnosed adults or even adults who don’t need assisted living but do need help please get in contact.
Doing this research has made me realise for the next 15years MO still has access to as much support as we all need, I will use it so that I can get him ready for life without support. Teach him how to calm his meltdowns and teach him social skills mainly so he can have friends if he wants friends but also so he can get that job that his OCD tendencies make him perfect. I do however pull positives from the 5 adults I spoke to, 4/5 of the adults living with being on the spectrum have a job. 2/5 have a family and the other 3 don’t want one/feel ready to settle down.
Being diagnosed isn’t the end of life. Your child or even yourself will be ok, it may just be a slightly different approach To life then planned but different isn’t bad it makes the world brilliant.
Thank you to everyone who spoke to me and inboxed me and thank you Louise for allowing me to quote and name you.